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DWP Has Paid Out £32 Million To Claimants So Far For PIP Errors

March 1, 2021

With many thanks to Benefits And Work.

 

The DWP has paid out £32 million so far to PIP claimants who lost out because of legal errors by the department, according to an update released this week.

The DWP is currently trawling through millions of claims looking for people owed money after it lost two landmark legal cases and had to change its guidance to decision makers.

In a decision known as MH, it was found that the DWP had been misapplying the law in relation to psychological distress and following the route of a journey.

In RJ, the DWP was found to have got the law wrong in relation to safety and supervision.

Since June 2018, the DWP has been looking for claimants who are entitled to back-payments because their award was calculated wrongly due to these errors of law.

The review exercise was paused from the end of March 2020 because of coronavirus, but began again in October 2020.

The latest figures show that:

  • around 890,000 cases have been cleared against the MH decision
  • around 990,000 cases have been cleared against the RJ decision

Approximately 6,600 payments have been made; of which:

  • around 3,600 arrears payments have been made from the application of the MH decision alone
  • around 3,000 arrears payments have been made from the application of the RJ decision alone
  • less than 100 arrears payments have been made from the application of both decisions simultaneously

The total amount of arrears payments the department has paid out is around £32million. Of this:

  • £18million has been paid from the application of the MH decision alone
  • £14million has been paid from the application of the RJ decision alone
  • less than £1 million has been paid from the application of both decisions

You can read the full report: PIP administrative exercise: progress on cases cleared, at 17 January 2021.

Integrated PIP/ESA/UC Assessment Trials To Resume

March 1, 2021

With many thanks to Benefits And Work.

 

The DWP is to resume trials of an integrated assessment for PIP/ESA/UC in April, Justin Tomlinson, minister for disabled people confirmed this week.

The DWP originally announced plans for an integrated assessment system for PIP and the work capability assessment (WCA) back in March 2019, with a further announcement in March 2020.

The original intention was to “test whether it is beneficial to claimants requiring face-to-face assessments to offer a single assessment for UC and PIP to capture all the information required for both claims in one appointment, reducing the need for claimants of both benefits to attend multiple appointments”.

In other words, the idea was not a single test for both benefits, but a single assessment at which the evidence needed both for PIP and a WCA would be collected.

Two years after that original announcement, it seems that virtually no progress has been made.

According to Tomlinson, the DWP had “started to test a single digital platform in a small number of assessment centres but this was paused due to the impact of COVID-19”.

The work will now go ahead within the Departmental Transformational Area (DTA). This is essentially an area where new processes can be tested on claimants before being rolled-out across the country.

The first DTA is at an undisclosed site in London and will begin in April of this year.

You can read Tomlinson’s full statement here.

The Disabled Influencers Making Their Mark On Social Media

February 26, 2021

“You have to work hard on being your true self, and believe in the brands you promote.”

Words of advice from 32-year-old disabled influencer Tess Daly from Sheffield, who uses her 200,000-plus followers on Instagram to promote her beauty tutorials and advertise beauty brands.

Electric wheelchair-user Tess, who has spinal muscular atrophy (SMA), has worked on social marketing campaigns for the likes of Boohoo and Pretty Little Thing, as well as various make-up brands.

She still cringes at the term “social influencer”, but says that she wishes there were more people like her when she was growing up.

“So many people with disabilities have told me that I’ve given them the confidence, not only to embrace their disability, but to also pursue their own love of make-up,” she says.

Tess is one of a growing number of disabled influencers who work with Martyn Sibley and his digital marketing agency Purple Goat, which he launched at the beginning of lockdown last year.

Martyn, who was also born with SMA, started the agency as part of his mission for a fully inclusive world.

“I believe by helping big businesses make more profit through including disabled consumers via disabled influencers, we’ll get true inclusion quicker,” he says. “With this model it’s a win-win for everyone.”

Purple Goat has worked with more than 75 influencers so far, but Martyn is keen to point out that they’re not a talent agency with people on their books.

“We work for the client and find the right influencer for each campaign,” he explains.

Taking the plunge

Around 14.1 million people in the UK have some sort of disability, and with those sorts of numbers comes serious spending power. According to disability charity Scope, the so-called “purple pound” is worth approximately £273bn every year.

But while disabled people make up around 22% of the UK population, this is not reflected when it comes to advertising. Up-to-date figures are hard to come by, but research from Lloyds Banking Group in 2016 showed that disabled people featured in just 0.06% of advertising.

This was the main driver behind Martyn launching Purple Goat. He thinks the world of marketing and advertising is now becoming a lot more socially aware, and is ready for disruption.

“I believe it’s partly the way public opinion has improved around diversity and inclusion,” he says. “Brands have been fearful of getting disability wrong, but they’re now fearful of being called out for doing nothing.”

Tess has certainly seen a pick-up in social media work. Up until last year, it was something she did as a sideline, but towards the end of 2020 she took the plunge to become a full-time influencer, and now works with an agent to manage her workload.

It wasn’t as easy as people may think, she says. “You can’t just wake up one day and decide you want to become a social influencer.”

‘Demanding to be seen’

Last year London-based luxury shoe brand Kurt Geiger started working with Northern Irish amputee model and influencer Bernadette Hagans.https://www.instagram.com/p/CElojtWpucY/embed/captioned/?cr=1&v=13&wp=589&rd=https%3A%2F%2Fwww.bbc.co.uk&rp=%2Fnews%2Fbusiness-56073239#%7B%22ci%22%3A2%2C%22os%22%3A10455%2C%22ls%22%3A334%2C%22le%22%3A427%7D

The company’s chief executive, Neil Clifford, thinks that the rise in disabled influencers is down to the public’s change of mood.

“The boom in social media has given a voice to those who have previously been under-represented in the public eye and they are, quite rightly, demanding to be seen and heard,” he says. “People expect businesses to utilise their influence to counter inequality and many brands are reacting to this need.”

Twenty-six-year-old Pippa Stacey from York works in the charity sector, and blogs about living with chronic illness. Pippa, who lives with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, has also worked with Purple Goat doing social media campaigns for brands such as Tesco.

“Influencer marketing is about so much more than just the hard sell. It’s about supporting a positive image of the brand and their values, of which inclusivity should be central in this day and age,” she says.https://emp.bbc.co.uk/emp/SMPj/2.39.19/iframe.htmlmedia captionPippa Stacey: “My content outperformed the non-disabled influencers”

Inclusivity on the part of big brands shouldn’t just be a tick box exercise, something they feel compelled to do to avoid criticism, she says.

“Having an ongoing relationship with disabled influencers, and taking the time to understand their platform. and their audience, can help brands construct the most effective campaigns in a socially conscious way.”

Listen and seek out

Authenticity is “the essence of a brand”, according to Dr Annmarie Hanlon, a lecturer in digital marketing at Cranfield School of Management.

“Without it they’re simply a shell with no substance. In our online world where consumers can check, verify and confirm details in minutes, it’s essential that brands remain true to themselves and present their authentic self.”

She adds: “Disabled influencers need a connection with the brand they’re promoting for it to be meaningful. Having a spokesperson that’s living with a disability adds another layer of trust and credibility for the brand.”

Caroline Casey is the founder of the Valuable 500, a worldwide initiative that encourages companies to push the needs of disabled people at board level.

She also believes that things are changing and that big companies are realising that it makes commercial sense, not just to listen to disabled customers, but to actively seek them out.

“Brands can now see the opportunity for innovation as well as growth and talent for an $8 trillion (£5.7tn) market,” she says, referring to the estimated spending power of disabled people globally.

“It’s not just about being seen to be doing good. It makes good business sense to expand your market.”

It’s a view shared by Laura Johnson, the co-founder of Zebedee Management, an agency that represents disabled models and influencers.

The agency manages Bernadette Hagans, who worked with Kurt Geiger, as well as Ellie Goldstein, the Essex model who was born with Down’s syndrome, and whose picture last year became Gucci Beauty’s most liked Instagram post.

Laura says they’ve seen a huge rise in brands keen to use disabled influencers to reach different markets.

“Where brands were once afraid they might come across as tokenistic for having a disabled model or influencer as part of their marketing, there’s a realisation now that disabled influencers really can influence. It makes simple commercial sense.”

Covid: Special School Teachers Angry At Vaccine Wait

February 25, 2021

Special school teachers are angry they must wait for a Covid jab while office-based council employees have already had theirs.

Staff in North Tyneside said they were more at risk because some pupils struggled to wear masks, to socially distance or catch coughs and sneezes.

One teacher, who asked to be anonymous, said they felt “hung out to dry”.

North Tyneside Council said it was “disappointed” all teaching staff had not been prioritised for the vaccine.

Director of children’s and adult services Jacqui Old said the National Joint Committee on Vaccination and Immunisation (JCVI) priority list did not include school staff.

But social care staff, transport escorts and staff in special schools who “provide direct personal care and clinical interventions” had been invited for vaccination, she said.

Industrial action

Teaching staff in North Tyneside said those working in similar schools in neighbouring authorities had been vaccinated.

“This wasn’t with leftover vaccine – they were given appointments at hospital,” one said.

“We feel hung out to dry and industrial action can’t be ruled out.”

One teacher said even staff required to physically restrain some pupils because of their behaviour had not been vaccinated.

“We already operate in environments that have more risks than mainstream schools due to the needs of the pupils,” they said.

“We have worked whilst other schools are closed and we even worked over our holidays last year to educate pupils and support families.”

Fear of mental health crisis as loneliness rises dramatically amongst disabled people

February 25, 2021

A press release:

 

  • Almost two thirds (61%) of disabled people are now chronically lonely, rising to 7 in 10 (70%) of young disabled people, according to new research conducted by the national disability charity, Sense.
  • Over two thirds (70%) of disabled people say their mental health is affected by social isolation, raising concerns of a significant increase in mental health conditions.
  • Tackling mental health issues and addressing chronic loneliness caused by the pandemic is what the majority (35%) of disabled people believe the government should prioritise once the vaccination rollout is complete, topping the NHS (32%), economy (22%), and education (8%).
  • Figures show that disabled people were disproportionately affected by social isolation and loneliness before the pandemic, but the dramatic increase has led Sense to call for urgent action from the government.
  • Sense is also inviting the public to sign its pledge to tackle social isolation and receive a free guide on the role they can play in making life more accessible for disabled people.

(Pictured: Christine Punt experiences an “overwhelming sense of isolation”.)

London, UK, 25 February 2021 – New research has sparked fears of a mental health crisis facing disabled people, as almost two thirds (61%) of disabled people say they are experiencing ‘chronic loneliness’*, feeling lonely ‘always’ or ‘often’, rising to 7 in 10 (70%) of young disabled people, aged 16 to 24. Sense, the disability charity that carried out the research, has called for urgent government action.

There are 14.1 million disabled people living in the UK, and while loneliness has risen across the whole population in the last year, today’s announcement reveals that it has jumped by a quarter for those with a disability, who prior to the outbreak, were already disproportionately affected by the issue.

More than a third (37%) of disabled people said they were chronically lonely before the pandemic, rising to one in two (54%) for 16 to 24-year olds. A third (33%) of disabled people would be limited to having under an hour interaction with someone else, each day.

Over two thirds (70%) of disabled people now say that social isolation is affecting their mental health and wellbeing, with 2 in 5 (40%) reporting an impact on their physical health. This has led to the majority of disabled people (35%) believing that the government should prioritise tackling mental health issues caused by the pandemic, over the NHS (32%), economy (22%), and education (8%), once the vaccination rollout is complete. 

The research is further evidence of the disproportionate impact the virus has had on the lives of disabled people. According to the latest data from the Office for National Statistics (ONS)**, disabled people account for almost six in 10 (59 per cent) of all deaths involving coronavirus, while making up 22 per cent of the population. Many disabled people have said that they have felt forgotten during the pandemic,  with social care support reduced, which has meant they have been unable to do basic chores such as leave the house, eat, wash themselves, socialise or attend essential medical appointments. 

The new study by Sense, which surveyed 1,011 disabled people***, reveals that 2 in 5 (40%) disabled people believe that disabled people and their needs have not been prioritised by the Government during the pandemic.

Christine Punt

(Pictured: Christine Punt)

Christine Punt (70) is deafblind (combination of sight and hearing loss), and lives in Watford with her husband, George. She has been shielding since the start of the pandemic, and with her care support reduced has had to depend heavily on her partner. She says the situation has taken a toll on their relationship and left her feeling frustrated and isolated.

Christine Punt said:

“I feel an overwhelming sense of isolation all the time, I have spent weeks at a time in bed. I have felt more aware of my disability throughout the pandemic, and I get frustrated as I cannot rely on support in the same way.” 

Lucy Dawson

(Pictured: Lucy Dawson)

Lucy Dawson (31) is also deafblind and lives with her guide dog in supported living accommodation in Norwich. As a disabled person, she says she has experienced social isolation and loneliness throughout her life, but prior to the pandemic managed to keep active, meeting with friends and family once a week, and taking part in her hobbies, photography, and poetry.  But Lucy says that events of the last year have taken a tremendous toll on her mental health and wellbeing.

Lucy Dawson, said:

“Since the pandemic, I’ve become totally isolated and am struggling with depression. I’m not as active as I was and have stopped doing the things I enjoy. My sleep is all over the place and my relationships have been affected.”

“The pandemic has made life really difficult for disabled people, and it feels like we’ve been cast aside and forgotten.”

Sense is calling for urgent action from the government, which includes scaling up mental health support for disabled people, and greater investment on preventative measures, such as dedicated services that tackle loneliness.

Richard Kramer, Sense Chief Executive, said:

“Many disabled people were already experiencing high levels of social isolation and loneliness before the pandemic, and the last year has made the situation much worse, raising fears of a mental health crisis.”

“Throughout the pandemic the needs of disabled people have been overlooked, and they have often felt forgotten.”

“The government must recognise the severe impact the pandemic is having on disabled people and improve the support available, so they are not left isolated and cut off from society.”

Sense is also aiming to raise disability awareness and understanding amongst the general public. 2 in 5 disabled people (44%) said it would be the most helpful measure in tackling social isolation, second only to introducing more community activities where people can meet (51%).

Richard Kramer, Sense Chief Executive, continued:

“We have all felt disconnected from others at some point during this pandemic, but loneliness has disproportionally affected disabled people. Many disabled people told us how they don’t have support networks around them and feel cut off from their local community. Others have struggled to leave their homes at all or to access and use digital technology to connect with people.”

“More widely, disabled people face practical challenges such as the need for accessible transport and buildings, financial support and appropriate social care. However, a lack of understanding and awareness of disability is also a significant obstacle.”

“We have all now experienced how it feels to have barriers preventing us from participating in everyday life. Our hope is that as we plan our way out of lockdown and begin to imagine what our lives will look like post-COVID, we can all commit to making society more accessible for everyone.”

“We can’t change what disabled people have experienced during the pandemic, but a more accessible society and a commitment to address loneliness can be its positive legacy.”

Sense is calling on the public to sign its pledge, committing to help create a more accessible society.  Upon signing the pledge, supporters will receive a free guide on how to make life more inclusive for everyone.

For more information, visit: www.sense.org.uk/LeftOutOfLife

Covid: 150,000 With Learning Disabilities To Be Prioritised For Vaccine

February 24, 2021

Everyone on the GP learning disability register should be prioritised for a Covid vaccine, the joint committee on vaccination has advised the government.

This means 150,000 people at higher risk with severe disabilities will be offered a jab more quickly in England.

But those with mild learning disabilities should not expect to be prioritised.

It follows DJ Jo Whiley’s plea for people such as her sister, Frances, to be vaccinated as quickly as possible.

Whiley was offered the vaccine before her sister, who has a rare genetic syndrome and lives in residential care.

The broadcaster’s sister is recovering after being admitted to hospital with coronavirus earlier this week.

‘So relieved’

“This is a great day, I am so relieved. I’m so happy for all those people who have been living in fear,” Jo Whiley said, adding that it was “very difficult” to categorise people according to their disability.

The charity Mencap said everyone with a learning disability should check they are on the register and, if not, ask to go on it.

People with a “severe or profound” learning disability in England and Wales were already in priority group six for the coronavirus vaccine, along with unpaid carers for those with disabilities and the elderly.

And adults with Down’s Syndrome have already been offered a jab, in priority group 4, as part of the UK’s target to vaccinate 15 million people by mid-February.

Now everyone on their GP’s learning disability register will be invited for vaccination as part of priority group six, Public Health England has confirmed, regardless of how severe their disability is.

And the NHS is being asked to work with local authorities to identify other adults, in residential care or receiving support to live in the community, who are severely affected by a learning disability and may not be registered, but who should be offered a vaccine.

Risk from Covid

It comes after an analysis found that people registered with their GP as having a learning disability, who tend to be those at the more severe end, are more at risk of being seriously ill and dying from Covid.

There are 1.2 million people with a learning disability in England – but only a quarter to a third of them are thought to be on the GP learning disability register.

Prof Anthony Harnden, deputy chairman of the JCVI, said all those with severe learning disabilities were “very disadvantaged” and should be reached out to – but he said including people with mild learning disabilities was not recommended because they were at no greater risk than someone else of the same age.

Speaking in front of a committee of MPs, he said he didn’t want lots of families who might be concerned about their relative with a mild learning disability to start contacting GPs and “overwhelming them”.

However, Nicola Sturgeon announced that Scotland would prioritise all people with learning disabilities in group six on Monday. She said priority group six would be expanded to include those with mild or moderate learning disabilities.

A report from Public Health England in November found that people with a learning disability were up to six times more likely to die from Covid-19 and, in the 18-34 age group, their risk was 30 times higher.

‘Check the register’

The charity Mencap said the announcement was “fantastic news for people with a learning disability”.

“It’s now crucially important that everyone with a learning disability checks that they are on the register and asks to go on it if they are not,” said the charity’s Jackie O’Sullivan.

“Being on the register has many benefits and entitles people to annual health checks and prioritisation for future vaccinations, as well as allowing them to get the Covid vaccine and be confident they are protected.”

Helen Whately, minister for care in England, said everyone who is on the GP’s learning disability register would be invited for vaccination to protect those at higher risk from the virus.

“I have heard first-hand how tough this pandemic has been for people with learning disabilities and their families,” she said.

“We are determined those more at risk from Covid should be vaccinated as soon as possible.”

Love and Relationships After Brain Injury

February 24, 2021

Laura Barlow is an associate in the Adult Brain Injury department at Bolt Burdon Kemp.

There was happy news for James Cracknell and Jordan Connell recently, as they announced they are engaged to be married.

The tabloids seem to have focused on the relatively short period of time between James’ divorce from Beverly Turner, without considering some of the more complex issues surrounding love and relationships after brain injury. I shall therefore explore those complexities a bit more here.

It is widely known that James suffered a serious brain injury in 2010, after being hit by a petrol tanker whilst cycling in The US. Despite making a good recovery, James was left with some permanent effects of the frontal lobe damage to his brain, most notably, changes to his personality and behaviour.

James and Beverly worked at their marriage for several years before accepting that things were not working. And although marriages and romantic relationships can survive the changes that come with a brain injury, it’s not unusual for relationships to come to an end. In some cases the injured party feels like a changed person and they may feel differently about the relationship post-injury. Where there has been personality change, the uninjured partner may suffer a sense of loss, loneliness and grief for the partner they used to know. Additionally, the boundaries between the roles of partner and carer can sometimes become blurred, which can lead to frustration, resentment and fatigue for both parties. In some cases, despite best efforts, there may be no way to make the relationship work going forwards.

It’s not all bad news though, because many relationships DO survive long-term following brain injury, and as James has proved, people who want it CAN find new love after brain injury.

In terms of nurturing existing relationships following brain injury, one of the most important things is that the partner learns about brain injury and the effects of the injury on their loved one. The more educated somebody is about their partner’s injury, the more likely they are to be able to utilise strategies to manage difficulties.

And we have to remember that it’s not only romantic relationships that can be challenging following brain-injury. Other family relationships can be put under a great deal of strain:

  • Parents of a child (whether adult or child) who has suffered a brain injury can suffer a great deal of fear and apprehension about their child’s future – they may want to protect their child from the world, which can cause conflict and tension.
  • Younger children of a parent who suffers a brain injury may find themselves taking on a caring role, forever changing the parent-child dynamics and resulting in a ‘stolen’ childhood.
  • Other family relationships can also be impacted by brain injury (siblings, grandparents, aunts, uncles etc.), as can relationships with those outside the home, including friends and colleagues.

Lockdown has placed an additional strain on many families living with a brain-injury survivor. Securing appropriate practical and emotional support can make a huge difference to all concerned, but for many, getting the right support has been especially challenging in the past year, with the isolation, social-distancing and lockdown measures that have been in place.

With the reduction in care services and support centres, many family members living at home with brain injury survivors have had little, if no, respite from the daily strain of keeping their loved one safe and healthy. Many charities and support organisations have moved services online during the pandemic, and although not quite the same as meeting face-to-face, they can provide that virtual ‘change of scenery’ and enough reassurance and support to give people a short break and a mental-health boost.

For those brain injury survivors who are keen to find a romantic partner, please have hope! The idea of dating can be a daunting prospect for anyone, but for brain injury survivors, some additional courage might be needed. Many brain-injury survivors successfully build and maintain loving relationships after brain injury, and there are specialist agencies who can help those who aren’t sure where to start in actively pursuing a new romantic relationship.

When it comes to going on dates, brain injury survivors may have concerns about a number of things, including communication difficulties. The key seems to be openness, and communicating honestly about any difficulties at the outset. Ensuring personal safety may also be a concern, especially when dating in-person comes back! Some tips for ensuring safety (for anyone) are to always meet in a public place until you feel you can trust somebody, being wary of how much personal information you share, and tell someone you trust if you feel a new partner is putting you under pressure to progress the relationship more quickly that feels comfortable.

With the right support, brain-injury survivors should be able to enter into new relationships with confidence and pride. And instead of the implied criticism directed towards James Cracknell for progressing a new relationship, we should all be applauding him and following his lead.

The brain injury association, ‘Headway’, has produced some excellent resources on relationships after brain injury, which you can find here.’

Record number of negligence claims over amputations

February 24, 2021

This is a guest post.

Fortunately, in the UK medical negligence mistakes are rare due to the high standard of care we receive. Unfortunately, when mistakes happen the impact on the individual and their family is huge and can be life changing. Mistakes come in all forms, with some of the most severe examples being amputation negligence. Helping someone pick up the pieces and get back to doing the thigs they love after an accident or negligence that leads to limb loss is so important. In this blog I will explore some of the key issues and questions I often get asked when helping a client along the recovery road. 

Amputation resulting from medical negligence can be caused in a variety of ways such as:

  • A surgeon operating on the wrong site
  • Poor management of peripheral neuropathy in diabetic patients
  • Delayed treatment of an infection
  • Failure to recognise the blood supply has been cut off to a limb
  • Where cancer is involved, it is important to stop the spread as soon as possible, and failing to do so can lead to the need for amputation.

Due to the aggressive and rapid development of infections and viruses, delay in treatment of a few days or even a few hours can mean that it is too late to save hands, toes, feet or in extreme cases whole limbs and therefore timing in these cases is critical.

How to bring a medical negligence claim and the time limits

To bring amputation related medical negligence claim there are a number of different tests that must be satisfied for it to be successful.

Firstly, we must prove that the Doctor/Hospital have breached their duty and the care and treatment they provided was negligent which fell below the reasonable standard expected from a medical practitioner. Secondly, we must show that as a result of this breach, you have suffered injury, i.e. have had to undergo an avoidable amputation.

In terms of time limits, you have 3 years from when the amputation took place to make a claim for compensation. If you’re claiming on behalf of a child, you have until their 18th birthday to start the claim, after which it will become the child’s responsibility and the 3-year deadline applies

An amputation will have a dramatic effect on anybody’s life. Apart from the physical and emotional pain and suffering, it can prevent you from working in your job leading to having to take work which is less paid.  

The physical aspects following an amputation are very tough and the mobility restrictions will require specialist prosthetics to help with movement on a day to day basis. In some cases due to not being able to climb stairs, it may even lead to changing to an alternative property without stairs.  Even if you can remain in your present home, it is likely that special equipment will be required to assist with your everyday needs.

All of these arrangements cost a very considerable sum of money and that is why compensation is of vital importance.

Whilst compensation cannot return your life to exactly how it was before your accident, it is designed to get you as close as is reasonably possible and will help secure funding to ensure life continues to be full of enjoyment with the use of the equipment and support required.

Before an incident everyday tasks can be tiresome or just part of a routine, but take that away suddenly and with no warning, you quickly realise that those small acts are essential to who that person is. Bringing a claim is about getting people back to that point, ensuring they have the right equipment to do these everyday jobs that make them, them. For one of my clients, playing sport was an essential part of life so we made sure that he was able to purchase the relevant prosthetics  children to bed was all he wanted to do, so ensuring he had an up-to-date wheelchair that was easily moveable in a small bedroom was central to the case. 

Bhavesh Patel, Solicitor in the Clinical Negligence team at Lime Solicitors

Face masks in classrooms “devastating” for deaf children

February 23, 2021

A press release:

 

The National Deaf Children’s Society has responded to reports that face masks will be mandatory in secondary school classrooms when schools return on March 8th.

Ian Noon, Head of Policy at the National Deaf Children’s Society, said:

“With England’s 35,000 deaf pupils close to a return to education, the goalposts on face masks have moved yet again. Public health must take priority, but bringing face masks into classrooms will have a devastating effect on deaf children’s studies, mental health and ability to take part in lessons.

“The Government cannot make an announcement and expect this to be enough. It must move quickly to show exactly how it will guarantee deaf children can still access their lessons.

“We cannot have a situation where thousands of deaf children and young people are unable to understand their teacher, leaving many with little point in even attending class.

“The future of their education is at stake and the clock has already started.”

People With Mild And Moderate LD Are Added To #VaccinePriority Group 6 In Scotland

February 23, 2021

Actress Kate Hudson Responds To Music Backlash

February 23, 2021

Actress Kate Hudson has responded to backlash about Music, the film she stars in alongside Maddie Ziegler.

The movie is about a neurodiverse teenager, who communicates through a tablet that speaks for her.

It was directed by pop star Sia, but after the trailer was released back in December, it received a lot of criticism for its portrayal of autism.

Kate Hudson said she feels “terrible” when anybody feels left out, and that she and the film’s creators “are listening”.To enjoy the CBBC Newsround website at its best you will need to have JavaScript turned on.

In the movie, Kate plays the half-sister of the film’s main character, Music. After becoming the teenager’s only guardian, she sets out to build a better life and family for them.

Kate said: “I think when people see the film, that they will see the amount of love and sensitivity that was put into it.

“But it is an important conversation to have, not just about this movie, but as a whole – about representation.

“For me, when I hear that there’s anybody that feels left out I feel terrible.

“It’s an ongoing and important dialogue to be had, about neurotypical actors portraying neurodivergent characters.

“It is an important one to have with people with experts and who know how to engage in the conversation.

“I encourage it, truly. I think that it’s important to say that we are listening.”

Why have some people criticised the film?

Music was recently nominated for two Golden Globe awards, but some people feel upset about the film.

Many people questioned why Sia decided to cast Maddie Ziegler – who doesn’t have autism – as the main character, instead of an actress who does.

Actress Bronagh Waugh wrote on social media: “Hi Sia, can I ask why you didn’t cast a disabled actor for this part?”

“It’s pretty offensive the way you’ve chosen to portray this character. People with disabilities are not broken and don’t need fixing.”

Jane Harris, from the National Autistic Society, told Newsround: “We know and have worked with many talented autistic actors and we think they should have had a chance to play the part of an autistic character.”

One fan said: “Oh Sia…..you’ve broken the hearts of so many autistic people.”

What has Sia’s response been?

At first Sia defended her decision and seemed annoyed at the criticism: “Why don’t you watch my film before you judge it?”

She said she did hire “special abilities kids” to work on the film, including one girl on the autistic spectrum, before casting Maddie, but said this actress found working on the film “unpleasant and stressful”.

She tweeted that she had “two people on the spectrum” advising her on the film and that she had researched the film for three years.

However, following the recent Golden Globe nominations and the ongoing criticism, Sia tweeted: “I promise, I have been listening” and that she was “sorry”.

 
 

One scene in the film shows Music’s character being held down and restrained to calm her down. This has sparked a huge backlash as this can be very dangerous for autistic people.

Responding to these concerns, Sia tweeted: “The motion picture MUSIC will, moving forward, have this warning at the head of the movie. MUSIC in no way condones or recommends the use of restraint on autistic people.”

“I plan to remove the restraint scenes from all future printings. I listened to the wrong people and that is my responsibility, my research was clearly not thorough enough, not wide enough.”

The singer then deleted her Twitter account.

The film is due to be released this month.

Covid-19: Manx Adults With Learning Disabilities To Get Vaccine Early

February 23, 2021

Some people with learning disabilities will be vaccinated against Covid-19 earlier than previously planned, the Isle of Man government has said.

Vaccine priority groups for adults with learning disabilities had differed depending on their conditions, but all will now be vaccinated by 31 March.

The change followed a “clear recommendation” from clinical advisors, a government spokesman said.

Health Minister David Ashford said it was a “practical decision”.

The Isle of Man had been following UK guidance, which recommends that people with Down’s syndrome receive the jab in priority group four, adults with severe or profound learning disabilities get it in group 6 and any remaining people have it in accordance with their age.

‘Safe and comfortable’

More than 150 people will now receive the vaccine at a dedicated hub at the Tall Trees adult day care centre, close to Noble’s Hospital in Braddan, in the coming weeks.

Mr Ashford said it was “important to create a space where individuals will feel safe and comfortable when getting their vaccination”.

Adults with learning disabilities who live in residential care have already been receiving the vaccine as part of the rollout to care homes, which began in January, with about 100 having had at least one dose.

To date, more than 13,000 people have had their first dose of either the Pfizer/BioNTech or Oxford-AstraZeneca vaccine and nearly 5,000 have had both doses.

A total of 456 people have tested positive for the virus since the start of the pandemic, 25 of whom have died.

There are currently 21 active cases on the island.

Hackney Has Started Dedicated Vaccination Events For People With LD

February 22, 2021

Same Difference joins Jo Whiley in hoping other areas do the same.

Covid 19 my vaccine experience.

February 22, 2021

The poor side of life

Yesterday I had my Covid 19 vaccination. I had the Pfizer vaccination and I really couldn’t wait for this day to arrive.

Most of you will know that my Covid 19 and Long Covid experience has been horrendous.

I first became ill with Covid 19 last April and I quickly became extremely unwell. You can read about this in my previous blog posts. I also developed Pneumonia and pleurisy and had numerous relapses.

To say that I was excited for my vaccine was an understatement, I can never forget how ill I have been and I certainly don’t want to catch it again. Not only do I have to think about myself I also have to think about my daughters wellbeing as well.

I was virtually bedbound for around a month except for the odd trip downstairs which completely exhausted me. As a result my illness really scared my daughter…

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Disability And Dating: ‘I Didn’t Know What Bisexual Was’

February 22, 2021

LGBT people with learning disabilities have often faced barriers when it comes to their identity – but some are now using their negative experiences to bring about change.

“I thought I was going mad, I thought there was something wrong with me.” That’s how Shaun Webster felt when he first realised he was attracted to both men and women.

Shaun is 48 now, but It took him over a decade to come out as bisexual – in part he says, because of barriers many LGBT people with learning disabilities face.

Shaun has short-term memory issues and dyslexia. He attended a special needs school when he was younger, where he says he wasn’t given a “proper sex education”.

“I didn’t know what bisexual meant,” he says. “Special needs schools didn’t do proper sex education for people with learning disabilities. They think people like us don’t have sex.”

In 2019, relationship, sex and health education was made mandatory in all schools in England. Before that, special needs schools didn’t have a mandate to provide sex education, so the provision was often mixed.

For some people, the lack of sex education in their youth made it really hard for them to come out as LGBT in later life.

‘Making babies’

Shaun says the little sex education he did get largely focused on “making babies rather than explaining terms like gay, bisexual, trans and non-binary”.

He didn’t come out until he was 38, but says he wishes he could have sooner. “Coming out when you’re 38 is a big thing to do. It’s life-changing.” When he did, he says he felt “a huge weight had been lifted” and he is now proud to be bisexual.

Shaun now works for Change, a learning disability charity, and as part of his work he helps to give sex education lessons.

One of the sessions Shaun runs focuses on sex and relationships, while the other looks at LGBTQ+ awareness. He says they talk about everything from sex, consent and the difference between friendships and relationships.

A lack of sex education isn’t the only barrier people with learning disabilities have faced.

Ray Everall is a 21-year-old trans man from Brighton. He struggles with communication, audio and visual processing and has learning difficulties, including ADHD, dyslexia and dyspraxia. For him the main challenges are around accessing trans health services.

He started taking testosterone in 2018 and is having top surgery – the removal of breast tissue – next month.

“The main difficulty is processing information especially when it comes to gender identity clinics, which are a whole minefield,” he says. “They have a checklist of things you need to be able to explain and I have difficulty expressing myself properly.”

“There are a lot of invasive questions about your sex life,” he adds. “That makes me uncomfortable. And when I’m uncomfortable it’s even harder for me to express myself.”

Trans people often report coming up against barriers in the health system, but having a learning disability adds another layer of difficulty for Ray. “Trans people are always infantilised to some degree and so are people with learning disabilities, so it becomes really challenging.”

Ray is now part of the NHS youth forum and is working on improving trans and non-binary access to healthcare. One of the things he does is to help to make leaflets with advice on, including issues such as legally changing your name and title.

And while Ray has met some nice people on dating apps, his learning disability can make them challenging territory. “I really struggle to read tone, so the other day a girl messaged me saying ‘you seem very bubbly’. But I was like what does that even mean?”

He adds: “Sometimes I take about a month to reply and that can make it seem like I don’t care but that’s not the case. I care a lot, I can just be quite forgetful because of my learning disability.”

Ray’s last relationship was with someone who also had learning disabilities. “I love being with other people who have learning disabilities because it’s so nice to be with someone who can empathise with your experience, even if they don’t have the same learning disability they just have more understanding.”

‘I’m making a difference’

Dr Claire Bates, runs Supported Loving, a national network that helps organisations support people with learning disabilities find love and relationships. She is also an honorary researcher at the Tizard centre, which specialises in learning disabilities, community care and autism.

Dr Bates says people with learning disabilities who identify as LGBT have often “really struggled to meet partners and find relationships”.

The situation is particularly hard for LGBT women with learning disabilities, she adds: “I work with dating agencies for LGBT people with learning disabilities and some of them don’t have any women on their books.

“We don’t know exactly why but we know that in sex and relationship education there is very little about two women together. Historically when it comes to LGBT sex education it’s been more focused on gay men. I’m not aware of any learning resources solely aimed at LGBT women with learning disabilities.”

Dr Bates adds: “We certainly don’t talk about relationships with people who are LGBTQ very often in social care, there are some social care organisations doing a brilliant job but some just aren’t doing enough.”

The Care Quality Commission, which regulates social care in England, has guidance that says social care providers should support patients with their sex and relationship needs but it’s not listed as a key line of enquiry, meaning providers aren’t judged on the level of sex and relationship support they provide in inspections.

In social care settings – including in care homes, for people in supported living and those in their own homes – there isn’t much training for staff on how to have conversations around sex and relationships with patients who have learning disabilities.

Dr Bates feels regulators need to be seeing sexuality as “a fundamental part of being human”.

“In an inspection we should be looking at friendship and relationship support and that should include the whole spectrum of sexualities,” she says.

As for Shaun, today he is married and lives with his wife and children. He has an MBE for his work helping people with learning disabilities abroad and in the UK.

“I feel like I’m making a difference,” he says. “I feel proud to be a role model for people with a learning disability to help them to understand about their sexuality.”

Jo Whiley On Sister’s Covid: ‘It’s Been The Worst Week Of Our Lives’

February 22, 2021

DJ Jo Whiley says it has been “the worst week of our lives” as her sister, who has a learning disability and diabetes, is in hospital with Covid.

The BBC Radio 2 presenter said Frances, 53, had been offered a vaccine on Saturday but it was “too late” and she was now “fighting for her life”.

And she urged ministers to “forget the classifications” and protect all those with learning disabilities.

The government said it was working hard to vaccinate those most at risk.

Whiley said her sister had become very ill since testing positive for coronavirus following an outbreak at her care home in Nottinghamshire.

“Twenty-four hours ago we were talking palliative care and yesterday she rallied round and we are seeing her oxygen levels rise, so at the moment we have got hope.

“Twenty-four hours ago we didn’t have any hope at all, so she is an amazing fighter, she always has been a great fighter and I’m just hoping that her spirit gets her through.”

But she said it was particularly difficult to treat people with learning disabilities because they had complex needs and often struggled to communicate.

She said Frances had been so frightened that she would not allow medical staff to give her oxygen, adding: “That is why her oxygen levels plummeted, that is why she ended up fighting for her life.”

Whiley said her parents had not slept “for days” but fortunately had been allowed to be with Frances in hospital.

She said: “The idea of Frances having to do this on her own is unthinkable, and also actually people couldn’t cope with Frances.”

Her sister was so terrified when she was admitted that “she actually rampaged through the hospital and people couldn’t contain her and security guards had to be involved, they had to restrain her”, Whiley explained.

She added: “The fact that my mum was there and was able to talk her down and to be there with her and to try and give her oxygen was crucial.”

Whiley has previously questioned why she was offered the vaccine before her sister, who has the rare genetic syndrome Cri du Chat, but said it was possibly because she was deemed a carer for her sister.

People with diabetes and those with a “severe or profound” learning disability are in priority group six for the coronavirus vaccine, along with unpaid carers for those with disabilities and the elderly.

Speaking to Andrew Marr, Whiley said: “It felt like the cruellest twist in the world because I’ve been asking for her, wanting for her to have her vaccine for a year… to be protected.

“Then, for me to suddenly get a call to say that I’ve got the vaccine, it just felt hideously unfair.

“And she was actually called in for her vaccine last night, my mum got a message to say that she could get vaccinated, but it’s too late, she’s fighting for her life in hospital. It couldn’t be crueller.”

Whiley said she hoped speaking about her sister would underline the need to get people with learning disabilities vaccinated “as quickly as possible”.

She said: “Forget the classifications, forget the cohorts, just protect these people. They are so precious, they’re so vulnerable and they have no way of fighting for themselves – we have to fight for them. Get them and their carers vaccinated, stop them dying.”

‘Huge health inequalities’

Health Secretary Matt Hancock, also speaking to Andrew Marr, said: “My heart goes out to Jo and to her sister and her whole family.”

Asked if he found it odd that Whiley was offered the vaccine before her sister, he said it was “very important that we follow clinical advice in terms of the order of prioritisation”.

“And in group six, as it’s called, that’s where we vaccinate both those with learning disabilities and also their carers. And that group is being vaccinated right now.”

Edel Harris, CEO of learning disability charity Mencap, said the story of Whiley’s sister had highlighted that people with learning disabilities “suffered huge health inequalities” in England and should be prioritised for vaccination.

Ms Harris told the BBC: “The virus is not deciding if you are profound or severe, or mild or moderate – GPs don’t even use those definitions. That’s why we think they’re arbitrary, they don’t mean anything.”

Nearly six out of every 10 people who died with coronavirus in England last year were disabled, according to figures from the Office for National Statistics.

The Department of Health said in a statement: “We understand this is an enormously challenging period for many people and the NHS is working hard to vaccinate those most at risk, as quickly as possible.”

It said the government was following the recommendations of independent experts at the Joint Committee on Vaccination and Immunisation (JCVI) on which groups to prioritise for Covid-19 vaccines.

It added: “The committee advised the immediate priority should be to prevent deaths and protect health and care staff, with old age deemed the biggest factor determining mortality.”

Frances Whiley Is Very Ill In Hospital

February 20, 2021

Yesterday Jo Whiley Tweeted news of her sister’s illness:

She then added some useful advice:

And asked for some urgent support:

Same Difference wishes Frances, Jo and the family all the very best. If you are on Twitter and able to help them or even send thoughts, please do.

Ian Rankin Hits Out At Lack Of Covid Jab Advice For People With Learning Disabilities

February 19, 2021

The crime writer Ian Rankin has criticised the “woeful” lack of information on the Covid vaccine rollout for people with learning disabilities after revealing his son is still awaiting his jab.

Rankin, whose 26-year-old son, Kit, has Angelman syndrome and lives in a care facility close to the family home in Edinburgh, accused governments and the media of “ignoring” the learning disabled in an interview with the disability campaigner Nicky Clark.

His intervention comes after the BBC DJ Jo Whiley described the “nightmare” of being offered the coronavirus vaccine before her sister, who has a learning disability and diabetes.

Asked about the case at first minister’s questions on Wednesday, Nicola Sturgeon promised that people with learning disabilities would be invited for vaccination from next week.

She said her government was considering whether it needed to take further action but added that “a range of people with learning disabilities” are already classed as extremely clinically vulnerable and were thus included in the 140,000 of that group already vaccinated. “[Others with learning disabilities] will be offered the vaccine as part of cohort six and invitations should start to be issued from next week,” she said. Advertisementhttps://093e8a9d04b5fc2b27d154352d5ddba2.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

Rankin later told the Guardian that he “would question the first minister’s interpretation and the advice given to her”.

He said: “Where Kit lives, his housemates are in and out of hospital all the time – I would say that makes them extremely vulnerable. It is hard to see how any health professional or scientific adviser could decide which group Kit or anyone else belongs to without seeing them and making an assessment.” He added: “The lack of information for carers and families has been woeful.”

Angelman syndrome is a genetic condition that affects the nervous system and causes severe physical and learning disabilities.

In the interview with Clark, Rankin said: “The learning disabled have been ignored by governments and the media. We keep being blithely told that care homes are at the top of the list and everybody in care homes has been treated and you are thumping the table going ‘no they’ve not’. The most vulnerable are people with learning disabilities and my son has not been vaccinated yet. Perfectly healthy 60 to 65-year-olds in Scotland are being vaccinated but not my son or the other people in his facility.”

He said he had not been told where or when Kit could expect the vaccine, adding that the dearth of information was “very frustrating” and indicated a “lack of joined-up thinking”.

He described how his son had been shielding in the care facility where he has been unable to hug visitors since the beginning of last March. Praising Kit’s “phenomenal” carers, he said his son had lost out on trips out, physiotherapy and other therapies that previously gave his day structure and interest.

He said Kit, who he described as “incredibly sociable and tactile”, was allowed home for one night at Christmas, the first time he had been able to leave the facility since last February. “That was the first tactile contact we’d had with him. Now we’re back in lockdown again and it’s back to seeing him through the gate or over the wall.”

According to latest estimates from the Office for National Statistics, for those with a medically diagnosed learning disability the risk of death from coronavirus was 3.7 times greater for both men and women than for people who did not. People with a “severe or profound” learning disability are in priority group six for the vaccine, which is being targeted now.

Engineer Creates Robotic Glove To Help Strengthen Grip

February 19, 2021

An Edinburgh engineer has created a robotic glove which uses artificial intelligence to boost muscle grip.

Ross O’Hanlon came up with the idea after seeing his aunt, who has multiple sclerosis, struggle to do tasks such as drink water or change the TV channel.

He hopes it will help millions of people with hand weaknesses to retain their autonomy.

The glove detects the wearer’s intention to grip using a process called electromyography (EMT).

This measures the electrical activity which is created in response to a nerve’s stimulation of the muscle.

It then employs an algorithm to convert the intention into force, helping the wearer to hold an item or apply the pressure needed to complete an activity.

The technology is expected to help with a range of daily tasks including opening jars, driving and making tea.

‘Healthy ageing’

The glove is the first product from BioLiberty, a Scottish start-up Mr O’Hanlon co-founded with three other engineering graduates.

It is estimated that 2.5 million people in the UK suffer from hand weakness through illnesses such as multiple sclerosis, motor neurone disease and carpal tunnel syndrome – as well those who have lost muscle mass due to age.

Mr O’Hanlon, 24, said: “Being an engineer, I decided to use technology to tackle these challenges head on with the aim of helping people like my aunt to retain their autonomy.

“As well as those affected by illness, the population continues to age and this places increasing pressure on care services.

“We wanted to support independent living and healthy ageing by enabling individuals to live more comfortably in their own homes for longer.”

The team have created a working prototype and have now secured support from Edinburgh Business School’s Incubator, based at Heriot-Watt University.

“We’re confident that support of this type will help accelerate the glove into homes more quickly,” he added.

Fear Of Dogs Can Be Relevant To PIP Mobility

February 18, 2021

With many thanks to Benefits And Work.

 

An upper tribunal judge has held that fear of dogs, if linked to a disability or health condition, may be relevant to a personal independence payment (PIP) mobility award.

The claimant listed her conditions as: autism, dyslexia, dyspraxia and depression.

In her PIP questionnaire the claimant wrote:

“I am able to plan routes and travel in familiar routes. However, I have a very severe Phobia of Dogs which is a result of sensory issues from my ASD which prevents me from undertaking journeys which are unfamiliar without someone to go with me or by travelling via car. This is due to my very severe anxiety that a dog may be present in the unfamiliar route”.

The claimant was awarded zero points for the daily living and for the mobility component of PIP.

The claimant appealed and was awarded 5 points for daily living by the first tier tribunal, not enough for an award, and still got zero points for mobility.

The tribunal noted that the claimant had a degree in theoretical physics and was studying law. It appeared to find much of her evidence unconvincing and overstated.

The tribunal noted that the claimant drives her son to school, uses trains and trams and goes out alone most days. They stated that they had difficulty accepting her argument that she could not go anywhere unaccompanied in case there was a dog off the lead and that she would not suffer overwhelming psychological distress. The tribunal held that the claimant suffered from anxiety rather than depression and her fear was of dogs running free, not of going to unfamiliar places.

The claimant appealed to the upper tribunal.

The upper tribunal judge found that the first tier tribunal had not made it clear why they had reached the decision they did: was it because they found the claimant’s evidence to be unconvincing, that the claimant’s fear did not amount to overwhelming psychological distress or because they considered that fear of dogs was not relevant to the descriptors.

The judge held that the claimants fear of dogs could fall within the scope of descriptor 1d: Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid, where the fear was linked to a physical or mental health condition, in this case autism. This would be the case where the fear was so great as to lead to overwhelming psychological distress when the claimant was unaccompanied, but the presence of another person would allow them to follow the route.

The judge upheld the claimant’s appeal and sent the case back to be heard by a new tribunal.

The principle in this case could be applied to other extreme fears that claimants may have in relation to following journeys.

You can download a copy of EE v SSWP (CPIP) [2021] UKUT 17 (AAC) from this link.

 

Philippa Day Prevention Of Future Deaths Report Published

February 18, 2021

With many thanks to Benefits And Work.

 

The coroner in the case of Philippa Day has published his prevention of future deaths report, which the DWP and Capita have to respond to by 12 April. The coroner has made three recommendations after highlighting ‘multiple errors’ in the administration of the claim and says that were it not for these, it is ‘unlikely’ that Philippa would have taken an overdose.

Philippa took her own life after her DLA was wrongly stopped and she was required to attend a PIP face-to-face assessment, in spite of experiencing mental health issues including emotionally unstable personality disorder (EUPD), anxiety, depression and agoraphobia.

The coroner noted the many mistakes made in Philippa’s claim and the effect these had on her finances:

“The administration of Philippa Day’s benefits claim was characterised by multiple errors, some of which occurred repeatedly throughout the period of her claim. As a result of errors made, Philippa Day’s income from benefits more than halved for a period of several months, causing her severe financial hardship. This then resulted in Philippa Day taking out high interest loans creating a financial problem that Philippa Day did not have the means to solve.”

The coroner also noted that Philippa was told she had to attend an assessment, even though this was clearly unnecessary:

“No assessment was in fact required in order to determine her claim and there was clear and abundant medical evidence that an assessment outside of the home would exacerbate her mental health against a background of two recent overdoses. . . . Although the error in decision making was drawn to the attention of those administering the claim on more than one occasion, it was not rectified as it should have been.”

The coroner was clear that the failures by the DWP and Capita led directly to Philippa’s death:

“The distress caused by the administration of Philippa Day’s welfare benefits claim led to Philippa Day suffering acute distress and exacerbated many of her other chronic stressors.

“Were it not for these problems, it is unlikely that Philippa Day would have taken an overdose of her prescribed insulin on 7th or 8th August 2019.”

The coroner has called for the DWP and Capita to take action in three areas:

1 Specific training for DWP call-handlers in how best to interact with people “suffering from mental ill health in such a way as to avoid inadvertently exacerbating the difficulties experienced”.

2 More detailed and more accurate records of calls, to improve decision making and allow for the efficient answering of queries made by claimants.

3 Improvements in the assessment process to allow incorrect decisions to be rectified and to allow appointments to be cancelled without the claimant being penalised.

Capita and the DWP must respond by 12 April to say what action they are taking or explain why they do not intend to take any action.

You can download a copy of the report from this link.

Lucy Hale Obituary

February 18, 2021

My daughter, Lucy Hale, who has died aged 26, was a composer who worked to help young disabled musicians to write and perform music.

Diagnosed with a neuromuscular disability at a young age, Lucy had to use a wheelchair and often required ventilatory support. Despite being physically unable to play an instrument and needing 24-hour care to support her independent living, she secured a number of commissions to write music, including with the national arts charity Drake Music. This led to a collaboration whereby she trained as a mentor to work with disabled and neurodiverse young people, supporting them to realise their creative skills.

Later she was appointed inaugural associate composer with the Bournemouth Symphony Orchestra’s Resound project, the world’s first disabled-led ensemble, and was subsequently composer in residence at the National Orchestra for All, which brings together 100 young musicians who would not normally get the opportunity to make music with others.Advertisement

Working with the National Orchestra for All was a source of particular pride and pleasure to Lucy, for while she took great joy from her own composing she was thrilled to be able to support and encourage other young musicians, and would constantly champion their achievements. She responded to all her achievements with great humility and a measure of disbelief.

Lucy was born in Thornton Heath, south London, to me and my husband, John Mellor, both of us social workers. Despite her disabilities, Lucy always showed a great determination of spirit, and from a young age had a real desire to experience new adventures. She was a keen dressage rider until forced to give up following spinal surgery.

After repeated admissions to intensive care during her early teens, Lucy attended Treloar’s residential school in Alton, Hampshire. She thrived there, and found a talent for musical composition, nurtured by her teacher, Jocelyn Watkins, who drew Lucy to the attention of the Royal College of Music junior department, where she was offered a place to study composition. From there Lucy went on to the Royal Northern College of Music in Manchester, graduating with a BMus and an MMus with distinction.

Lucy was a passionate and powerful advocate for the disabled community and a fierce defender of the NHS and its guiding principles. She was an inspiration to many, and her paediatric respiratory consultant often played her music to colleagues and students “to show them why we battle to save children with neuromuscular problems and to demonstrate what they are capable of achieving”.

She was on the Royal Philharmonic Society Composers programme, and was about to begin a PhD studying assistive technology in music. The outpouring of affection and acclaim for Lucy has been overwhelming, reflecting the profound impact she had on those who had the privilege of knowing and working with her.

She is survived by me and John, and by her older sister, Eleanor.

Frances Whiley: Another Sister Speaks For Her Brother With LD

February 17, 2021

Since the pandemic began more than a year ago, one of my greatest fears has been losing my brother, who lives in a care home. He is in his late 20s, is severely autistic and has epilepsy, as well as other complex needs. He is extremely vulnerable. According to Public Health England, people with severe learning disabilities are six times more likely to die from Covid-19 than the general population. In my brother’s age group, the 18-34 bracket, the death rate is 30 times higher.

Then there is the added risk of where he lives. According to the Office for National Statistics (ONS), living in a care home is a “major factor in the increased exposure of people with learning disabilities to Covid-19”. The communal nature of these facilities, combined with how much contact is required between care workers and residents – my brother needs help with everything, from washing and dressing to preparing food – makes transmission much more likely.Jo Whiley offered Covid jab before sister in care home who later tested positiveRead more

This is terrifying for families, many of whom are still waiting for their loved ones in care homes to be vaccinated and dread the news of an outbreak. This is the nightmare that the DJ Jo Whiley and her sister Frances are now living through.Advertisement

If my brother did fall ill, he would be unable to communicate his symptoms. His epilepsy means that a high temperature could cause a life-threatening seizure. Were he admitted to a hospital, he wouldn’t really understand what was happening. If treated using tubes for ventilation he would probably pull them out, and the fear might make him aggressive, so he could pose a risk to staff and patients. My fears for his life should he become ill were not helped by news about disabled people being sent “do not resuscitate” forms.

Then in January, we received the news that, along with other care home residents, my brother would be receiving the vaccine. I cried with relief. But the feeling was to be short-lived. After announcing that all care home residents in Wales would be vaccinated by the end of January, the Welsh health and social services minister, Vaughan Gething, said that he had meant only elderly care home residents.

To our shock, my brother was placed in category 6 of the Joint Committee on Vaccination and Immunisation (JCVI) priority list. His carers were distressed and confused. They had all been vaccinated, and furthermore, the care provider’s English residents had all been vaccinated too.

The JCVI guidelines focus on age groups rather than taking into account the “complex needs” of individuals such as my brother. At the same time, there is flexibility when it comes to making decisions about vaccine prioritisation under the UK’s devolved health system. What has emerged is, essentially, a postcode lottery.

In England, there seems to be more willingness to take personal circumstances into account at all levels: government, health board, and GP. Some GPs have spoken to disabled people and their advocates and agreed to move them up the list on the basis of their being “extremely clinically vulnerable”. Other doctors, health boards and local authorities have diverted spare, perishable doses of leftover vaccines to care homes for disabled people.

However, Wales’s adherence to the JCVI list has been especially rigid, and Welsh Labour’s intransigence when prevailed upon to think again has been depressing. I have spent the past two weeks on the phone and sending frantic emails to everyone I could think of – the GP, our assembly members, the health board, public health, various charities – while crying my heart out in between. Every day we had to wait felt like the day my brother could become sick. As a family we felt left behind.

On Friday, the care home finally received news of a vaccination slot for my brother. This was a decision that was made on a GP level, due in part, I suspect, to the letter the care manager wrote to the doctor laying out all the ways in which my brother is extremely vulnerable, as well as the advocacy of our family. The other residents in my brother’s care home, as in other Welsh care homes, are still waiting. Like the rest of group 6, they could be waiting until April (the Welsh government says it hopes to be more flexible with groups 5-9, but we will see how that works in practice). So while I am jubilant, I am also fearful for the 3,500 severely disabled people in care homes in Wales, and for the people across the UK who face similar battles.

It is still a mystery to me how the JCVI can lump all severely disabled people together when being in a care home puts a person at so much extra risk. Furthermore, it’s unfair that access to a jab for severely disabled people is dependent on being noisy and knowing who to lobby, and having the time to do so. The postcode lottery is unjustifiable and puts added strain on disabled people, their families, their carers and their doctors.How the Covid pandemic could end – and what will make it happen fasterDevi SridharRead more

Analysis by the ONS last week showed that six in 10 Covid deaths up to November last year were of people with a disability. Throughout this pandemic, disabled people and their families have been forced to confront the possibility of mortality. We have also had to face the fact that some people do not deem disabled people’s lives to be important or worthy, and would happily see them thrown under the bus if measures to protect them harm the economy. After 10 years of ideologically driven suffering at the hands of the Conservatives, the discriminatory tone of many lockdown sceptics has been a hard pill to swallow. Do not resuscitate letters are still being sent out.

When my brother gets his jab this week, I will be over the moon. It brings me one step closer to seeing his smiling face – it has been more than a year now since I have been able to visit. But I will also think of all the families who are not so lucky, and of those vulnerable people in care homes who, like Frances, caught Covid unnecessarily while they were waiting for a vaccine. I cannot imagine the fear and fury that Frances, Jo and her family are feeling. As ever, being disabled means having to continually fight the system. It’s exhausting and it’s unfair, and people will die because of it.

 

European Space Agency: Astronaut Recruitment Drive For Greater Diversity

February 17, 2021

The European Space Agency says it wants to recruit someone with a disability as part of its call for new astronauts.

Esa will be accepting applications in March to fill four-to-six vacancies in its astro corps but it wants this draft process to be as inclusive as possible.

The search for a potential flier with additional functional needs will be run in parallel to the main call.

The agency has asked the International Paralympic Committee to advise it on selection.

“To be absolutely clear, we’re not looking to hire a space tourist that happens also to have a disability,” said Dr David Parker, the director of Esa’s robotics and human spaceflight programme.

“To be very explicit, this individual would do a meaningful space mission. So, they would need to do the science; they would need to participate in all the normal operations of the International Space Station (ISS).

“This is not about tokenism,” he told BBC News. “We have to be able to justify to all the people who fund us – which is everybody, including people who happen to be disabled – that what we’re doing is somehow meaningful to everybody.”

Individuals with a lower limb deficiency or who have restricted growth – circumstances that have always been a bar in the past – are encouraged to apply.

At this stage, the selected individual would be part of a feasibility project to understand the requirements, such as on safety and technical support. But the clear intention is to make “para-astronauts” a reality at some point in the future, even if this takes some time.

Esa is on a big diversity drive. On matters of gender, for example, it has lagged seriously behind.

Only one of its current crop of astronauts is female (Samantha Cristoforetti); likewise only one of its senior directors is a woman (Elodie Viau in telecoms). And in those leading positions on robotic space missions – the project scientist and project manager – the vast majority are still men.

Just 16% of applicants to the last Esa astronaut call in 2008 were female. The agency wants to see that increase dramatically this time around. Applications are being accepted from 31 March to 28 May.

To qualify, candidates must have a master’s degree (or higher) in Natural Sciences, Medicine, Engineering, Mathematics or Computer Sciences, or be qualified as an experimental test pilot.

“They need to be fluent in English with a good knowledge of a second language. It doesn’t matter what that second language is, but it must be a second language,” said Lucy van der Tas, Esa’s head of talent acquisition.

The ability to speak Russian – the other language used on the space station – will be part of the training programme.

The recruitment process should see at least four individuals go straight into the Esa astronaut corps, which is based in Cologne, Germany.

A further 20 candidates will additionally go into a reserve.

They will be contracted to make themselves available for call-up, either because of retirements among the existing astronauts or because individual Esa member states want to run a national mission to the ISS.

This is now possible because the American aerospace companies SpaceX and Boeing will be selling seats in their new crew capsules on a commercial basis.

If the member state purchased this opportunity, Esa would train up their national candidate in the reserve pool.

The successful candidate that has a disability will also go into a reserve. Esa will then work with its partners on the ISS to find the best way to fly a para-astronaut.

“We did not evolve to go to space so when it comes to space travel, we are all disabled,” said Samantha Cristoforetti. “What brings us from being disabled to go to space to being able to go to space is just technology. This is a feasibility study and we’re going to look into what exactly is needed, how much it will cost – but that’s the goal.”

The last astronaut selection process saw Frenchman Thomas Pesquet; Italians Samantha Cristoforetti and Luca Parmitano; Germany’s Alexander Gerst; Denmark’s Andreas Mogensen; and the UK’s Tim Peake join the corps in 2009. Germany’s Mathias Maurer – an “also suitable” – joined up in 2015.

Tim Peake’s selection raised some eyebrows at the time because the UK back then did not help fund Esa’s human spaceflight programme. But the agency stresses that applications are accepted from all its member states, irrespective of national funding decisions.

Of the new call, Tim Peake told BBC News: “We’re involved in the Artemis programme, which will send humans back to the surface of the Moon, and that’s a gateway to Mars. So this [draft] could be recruiting the first Europeans who will set foot on Mars.”

‘Disturbing’ Hallucinations Increase During Lockdown For Blind People

February 16, 2021

Lockdown has seen a “disturbing” rise in the number of blind people experiencing distressing hallucinations, the RNIB charity says.

The condition, known as Charles Bonnet syndrome (CBS), causes patients to have vivid hallucinations.

False images are triggered when the brain tries to fill in the gaps caused by sight loss.

The RNIB said calls to its helpline had increased by almost 50% and patients had reported more sinister visions.

CBS is thought to affect up to 30% of those with sight loss, although it can sometimes be confused with mental health concerns.

‘Pool of blood’

Recently, Coronation Street highlighted CBS after Johnny Connor – landlord of the Rovers Return pub – experienced disturbing visions of cockroaches, mice and his dead son.

He became increasingly concerned about his mental health until, in Monday night’s episode, he was diagnosed with CBS after visiting a doctor while in prison.

Kirsty James, 31, from Caerphilly has been registered blind since she was 13 and says she first experienced an hallucination about a decade ago.

“I looked down and saw a pool of blood around my guide dog. I screamed out – ‘my dog’s paws are bleeding’ – but when I touched them there was nothing there. I was mortified.

“I didn’t talk about it for so long – I was ashamed and embarrassed. I had been having hallucinations for a year before I told my husband.

“But it helps to talk about it – makes it less scary.”

Judith Potts who runs Esme’s Umbrella, a support group for people with CBS, says shame can sometimes stop people seeking help.

“People who develop it think immediately they’ve developed a mental health condition,” she says.

“So they don’t confide in anyone and they live in their world of uninvited images, it’s utterly terrifying.”

Nina Chesworth, 38, from Manchester developed CBS when she lost her vision and experiences a variety of hallucinations.

“When I’m feeling calm I have colourful patterns and bubbles – like a lava lamp – and sometimes cartoon characters or unicorns. Mickey Mouse is a frequent visitor.

“But when I’m more anxious, upset or angry, I find they morph into scarier images. Ghost faces or zombie faces appear a lot. I’ll often see eyes staring at me.

“When I finally got a diagnosis it was was so nice to hear someone say: ‘This is a condition’. But it was still a big pill to swallow, and it still affects my life.”

Research by University College London found half of patients with CBS had found their hallucinations had become more sinister during lockdown and more than 50% said they were more frequent.

‘It scared me’

Professor Mariya Moosajee, one of the researchers and a consultant Ophthalmologist, said: “The main triggers are loneliness, reduced exercise, exposure to chronic depressing news – all things we are seeing in lockdown.”

The Royal National Institute of Blind People (RNIB) said its helpline now received more questions about CBS than any other condition, including cataracts.

Keith Valentine, director of development at the RNIB, said: “The numbers are disturbing because we know lots of people are coping with this alone and not getting diagnosed.

“I get hallucinations myself and whilst I’m a confident blind person it scared me when the hallucination was staring at me through the window.

“If you’re going through this, you’re not alone.”

Mr Valentine advised anyone experiencing hallucinations to contact the RNIB.

Rachel Johnston: ‘She Was A Young Woman And Her Life Was Taken Away’

February 16, 2021

The mother of a disabled woman who lay “slowly dying” while nursing staff failed to raise the alarm says she hopes her death was not in vain.

Rachel Johnston, 49, fell seriously ill after having an operation to remove all her teeth due to severe decay.

A coroner found neglect by nurses at Pirton Grange Care Home, near Worcester, contributed to her death.

“She had a wonderful little life and it was taken away from her,” said Diana Johnston.

Miss Johnston, who suffered brain damage after contracting meningitis when six weeks old, lived at Pirton Grange from 2013 where she should have been able to have 24-hour medical care.

Always singing, she was a popular resident.

“She was such a happy young woman and loved life,” her mother said. “She loved a party and she loved people. She was the soul of everything.”

There was little Miss Johnston could do for herself, including brushing her teeth. After a lifetime of difficulty, a dentist examined her in 2018 and discovered every one needed to be removed because of the risk of infection.

A ‘full dental clearance’ is a major procedure for any individual, not least someone with profound learning difficulties.

Questions have been raised about the procedure with campaigners saying they are often told of poor communication between disabled patients and their families, and that dentists should intervene earlier to avoid taking out every tooth in a person’s mouth.

Miss Johnston was given a local and general anaesthetic at Kidderminster Hospital and underwent the procedure on 26 October that year. She was discharged four hours later after appearing in high spirits once she’d come round.

But, as she arrived back at the care home that evening, Miss Johnston fell asleep. Over the next 42 hours, she bled intermittently from her mouth, was seen making “gurgling noises” and never fully woke up.

Despite this, two nurses responsible for her care failed to carry out basic physiological tests that would have showed Miss Johnston was struggling to breathe. Neither did they keep records of her condition that would have shown she was deteriorating.

By the time an ambulance was called at 14:00 on 28 October, a doctor said her “entire brain had been starved of oxygen”.

The evidence and findings of Miss Johnston’s four-day inquest have been “heartbreaking”, her mother said.

“I put all the trust in the world in Pirton Grange. When Rachel went there, she was in their arms. They should have seen something was wrong but they didn’t do anything for her when she needed it,” said Mrs Johnston.

“That’s when my daughter was slowly dying. She never had a chance. They just didn’t seem to care.”

The inquest heard if Miss Johnston had been taken to hospital the previous night, she probably would have survived.

Coroner David Reid said the actions of agency nurses Sheeba George and Gillian Bennett amounted to “gross failures” and that neglect contributed to her death along with complications from surgery.

A hearing on 23 February will hear what changes have been made at Pirton Grange since Miss Johnston’s death, 10 days after her family agreed to switch off her life support machine. The home said in a statement systems had been altered and staff retrained.

With Miss Johnston falling amongst 1,200 avoidable deaths of people with learning disabilities each year, her mother hopes that lessons can be learned.

“So many die needlessly every year. I just hope that people learn from Rachel’s story – she was a young woman and her life was taken away unnecessarily.

“We fought for this because we knew they were in the wrong. We just hope that no one else has to go through what we have.”

Despite the heartache, Mrs Johnston said she and her family were relieved to finally have answers after two and a half years in the dark about how she died.

“When we went to the cemetery on Friday I just said to her – justice has been done, Rachel.”

‘Urgent matters’

Dan Scorer, head of policy at Mencap, said: “It’s already shocking that in the 21st century anyone with a learning disability should be facing removal of all their teeth.

“But it is devastating that Rachel’s subsequent deterioration wasn’t picked up until it was too late to save her. The failures in basic nursing care for Rachel at the care home should now be urgent matters for both the care regulator and Nursing and Midwifery Council to address.

“Everything needs to be done to make sure we never see a case like this again.”

Covid-19: Millions Of Asthmatics ‘Must Wait For Vaccine’

February 16, 2021

People whose asthma is under control will not be prioritised for the Covid vaccine, the government has confirmed.

Sufferers of the condition will not be on the list ahead of their peers unless they are formally shielding, regularly take steroid tablets or have ever had an emergency hospital admission.

This appears to be a rowing back from previous guidance indicating steroid-inhaler users would be eligible.

It has since been judged this group is not at increased risk of death.

The Department of Health and Social Care (DHSC) said it was following independent advice that the immediate priority should be to “prevent deaths and protect health and care staff, with old age deemed the single biggest factor determining mortality”.

A DHSC spokesperson said: “This prioritisation captures almost all preventable deaths from Covid-19.”

People with non-severe asthma are considered by the NHS to be at increased risk from Covid – but not at risk of dying from the virus.

Asthma has also been linked to an increased risk of “long Covid” – an array of different symptoms suffered by some people weeks or months after the initial infection has cleared.

Anyone with the condition requiring a steroid inhaler or tablets will be offered a free annual flu jab. And that’s led some people to question why they are being treated differently when it comes to Covid where only oral (tablet or liquid) steroids are considered.

vaccine priority list

Jeff Hunt, a 50-year-old from Somerset, said his moderate asthma had not required hospitalisation for the condition because he had been “extremely cautious” – but that didn’t mean his condition didn’t put him at risk.

“I’m really frustrated with the government guidance being so unclear,” he said. “It doesn’t feel like it makes sense.

“We’re all being called for an annual flu jab but now we’re being told we’re at no greater risk than the average population,” he added.

However, Asthma UK said the government had assessed evidence suggesting people with mild or moderate asthma, even those using high doses of inhaled steroids, were not at greater risk of dying.

A study tried to correct for this behavioural effect – the fact people with asthma may have been particularly careful – by only looking at the outcomes of people with asthma who had contracted Covid.

The most severe asthma sufferers will be vaccinated in the fourth priority group if they have received a letter advising them to shield.

People with asthma will be vaccinated in the sixth priority group, after the over-65s and frontline staff, if they:

  • Have ever had an emergency asthma admission, or;
  • They have had three oral (tablet or liquid) steroid prescriptions over a three month period

The first five groups cover care-home residents and staff, over-80s and front-line health and care workers, the over-75s, “clinically extremely vulnerable” people (shielders) and the over-65s.

There are nine priority groups in total, which the government says it will offer a first jab to by the end of April – including all over-50s regardless of health status.

The next set of priority groups has yet to be laid out.

But it is expected to include people with both a wider range of health conditions and in a broader group of occupations, like police officers and teachers.

Sarah Woolnough, chief executive of Asthma UK and the British Lung Foundation, said: “The government have advised people with asthma that they are clinically vulnerable to Covid, throughout the pandemic, leaving many people to believe that they were going to be in priority group six for the vaccine.

“However, based on evidence that a lot of people with asthma are at no increased risk of dying from coronavirus, it has changed the eligibility for category six, which means many people with asthma no longer fall into this group.”

She added: “The government must urgently communicate directly to people with asthma why it has made this decision, and explain the reasoning behind it.”

The charity is calling for people with non-severe asthma to be prioritised ahead of their peers after the first nine groups have been vaccinated.

“The government’s lack of attention, urgency and confused messaging around this issue from the start of the pandemic has caused needless anxiety for people and it needs to be put right,” she said.

Fury At ‘Do Not Resuscitate’ Notices Given To Covid Patients With Learning Disabilities

February 15, 2021

People with learning disabilities have been given do not resuscitate orders during the second wave of the pandemic, in spite of widespread condemnation of the practice last year and an urgent investigation by the care watchdog.

Mencap said it had received reports in January from people with learning disabilities that they had been told they would not be resuscitated if they were taken ill with Covid-19.

The Care Quality Commission said in December that inappropriate Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices had caused potentially avoidable deaths last year.Advertisementhttps://eb3ca1ecd275ae49142ae247f5e428af.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

DNACPRs are usually made for people who are too frail to benefit from CPR, but Mencap said some seem to have been issued for people simply because they had a learning disability. The CQC is due to publish a report on the practice within weeks.

The disclosure comes as campaigners put growing pressure on ministers to reconsider a decision not to give people with learning disabilities priority for vaccinations. There is growing evidence that even those with a mild disability are more likely to die if they contract the coronavirus.

Although some people with learning disabilities such as Down’s syndrome were in one of four groups set by the Joint Committee on Vaccination and Immunisation (JCVI) which the government promised would be offered the vaccine by tomorrow, many were classified lower categories of need and are still waiting.

NHS figures released last week show that in the five weeks since the third lockdown began, Covid-19 accounted for 65% of deaths of people with learning disabilities. Figures from the Office for National Statistics show that the rate for the general population was 39%, although the two statistics are drawn from different measurements.

Younger people with learning disabilities aged 18 to 34 are 30 times more likely to die of Covid than others the same age, according to Public Health England.

Edel Harris, Mencap’s chief executive, said: “Throughout the pandemic many people with a learning disability have faced shocking discrimination and obstacles to accessing healthcare, with inappropriate Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices put on their files and cuts made to their social care support.

“It’s unacceptable that within a group of people hit so hard by the pandemic, and who even before Covid died on average over 20 years younger than the general population, many are left feeling scared and wondering why they have been left out.

“The JCVI and government must act now to help save the lives of some of society’s most vulnerable people by urgently prioritising all people with a learning disability for the vaccine.”

More than 14m people have received a first vaccine dose so far, and care providers who spoke to the Observer said many people with learning disabilities had been vaccinated in the last week. But some are still waiting. One woman from the West Midlands who has a rare form of Down’s syndrome told the Observer she had not yet been given a date.

“It’s really frustrating – it’s been a fight and it shouldn’t have been a fight,” she said. Her condition means she is in category four – people who are clinically extremely vulnerable – but her GP did not have details of her condition on record – a common problem, according to Mencap.

“I had to call them lots of times,” she said. The practice accepted last week that she needed to be vaccinated, she said, but she was still waiting. “For people in a similar situation to me, they won’t have been badgering them as much as me.”

A lack of badgering is part of the reason why people with learning disabilities may be more likely to die from Covid-19 than the rest of the population, according to Dr Keri-Michèle Lodge, a consultant in learning disability psychiatry in Leeds.

“Doctors often don’t understand that someone with learning disabilities may not be able to communicate their symptoms,” she said. “Carers are sometimes not listened to – you might notice something is wrong, but that is often written off as part of their behaviour.

“People with learning disabilities already get a raw deal from the health services. Fewer than two in five people with a learning disability live until they are 65.”

An analysis by the Office for National Statistics last week showed that six in 10 Covid deaths were of people with a disability.

“The biggest factor associated with the increased rate of death from their analysis was living in care homes or residential settings,” Lodge said. “They prioritised people in care homes for vaccinations, but that was only for older adults. They completely forgot about people with learning disabilities in a really similar setting. I don’t know if the government were blindsided or just neglectful.

Professor Martin Green OBE, Care England’s chief executive, said: “As the largest representative body for independent providers for adult social care, Care England remains concerned that the government has not given individuals with a learning disability a higher level of priority for the Covid vaccine.

“We urge the government to remove the arbitrary distinction between prioritising those with a severe or profound learning disability and those with a mild or moderate learning disability, and prioritise all those with a learning disability in priority group four. People with learning disabilities must not be overlooked at any time.”

A spokesperson from the Department of Health and Social Care said: “It is completely unacceptable for ‘do not attempt CPR’ decisions to be applied in a blanket fashion to any group of people. This has never been policy and we have taken action to prevent this from happening.

“We have asked the CQC to undertake a review of notices issued during the pandemic. This review has started and will report later this year. As this proceeds, we will continue to work across the health and care system to address the issue.”

‘An Existential Threat’: Disabled And Chronically Ill Californians Criticize Vaccine Policy

February 15, 2021

Disabled and chronically ill Californians say that the state’s coronavirus vaccine distribution is leaving them in the lurch, as the death toll in the country’s most populous state continues to climb.

California abruptly announced last month that it was changing its vaccination policies to prioritize age, rather than underlying risk, in deciding who will get the inoculation next. The state is currently giving vaccines to people who are 65 years or older, nursing home residents and workers in healthcare, education, childcare, emergency services agriculture and food services. It had originally intended to vaccinate workers in transportation and manufacturing, people who are incarcerated, disabled people and people with high-risk medical issues next.

But in January, Gavin Newsom, the governor, argued prioritizing age would speed up the state’s lagging vaccine distribution. It “will allow us to scale up much more quickly to get vaccines to impacted communities much more expeditiously”, the governor said, by making it easier for officials to determine who is and isn’t eligible.‘Please send more vaccines’: Covid crisis engulfs California’s farming heartlandRead more

Advocates for disabled and chronically ill Californians have pushed back fiercely, criticizing the change of plans as a reactionary move that has left people with a range of physical and developmental disabilities and medical conditions uncertain and confused about when their turn will come. They have called on the state to change course, and reprioritize high-risk Californians – including disabled people, workers and people in prisons.Advertisement

Health officials have since signaled that they will announce a plan this week to give vaccines to some Californians with disabilities, but advocates said they are prepared to be disappointed. “We haven’t been getting any clear answers,” said Andy Imparato, the executive director of Disability Rights California. Imparato has been attending meetings with the Community Vaccine Advisory committee, a panel of experts and stakeholders, about the distribution plans.

“I know [officials] are trying to pay more attention to equity, and they’re including disability in those conversations about equity – but I don’t have confidence that we’re going to get a specific timeframe anytime soon for when people can get vaccines,” Imparato said.

He understands the need to simplify and speed up the vaccination process, he added, and that the state is short on doses. “All I’m looking for is simplicity and clarity – a plan,” he said.

 

California’s policy is a departure from national guidelines outlined by the Centers for Disease Control and Prevention, that recommend people of all ages with high-risk conditions get vaccinated first.

For Charis Hill, 34, a disabled activist based in Sacramento who lives with an autoimmune disease and takes medications that suppress their immune system, the announcement felt “like further evidence that nobody cares about disabled people”.

“It pissed me off, along with millions of other disabled people in California,” they said.

The news, which came a year into a pandemic that has disproportionately infected and killed disabled people, either because of their frequent exposure to caregivers and health workers or because of suppressed immune systems and other complications, has shaken Hill and other advocates.

“The decision to not prioritize disabled and high-risk people is essentially a death sentence,” said Hill.

Hill was worried about catching common viral infections even before the pandemic struck – for them a mild flu could turn into life-threatening pneumonia. For the past year, they have not left their house other than for unavoidable doctor’s appointments. “My in-person social interaction is almost all in the doctor’s office,” they said. “That’s the only time I touch a person, because it’s medically necessary.”

More so than physical isolation, Hill said they have felt a sort of “social and cultural isolation, from just being continually left out of the conversation and left out of planning for public safety and public health”.

The vaccine distribution across the US has been slow, and at times faltering – due in part to the limited quantity of vaccines. As the Biden administration works to speed up the process, many residents have questioned why California is trailing behind states with fewer resources, including Utah, the Dakotas and West Virginia, in administering the doses it has been allocated.

Alice Wong, a disabled activist in San Francisco, worries about the consequences the pandemic will have on disabled and chronically ill Californians. Photograph: Talia Herman/The GuardianAdvertisement

Both Utah and South Dakota have prioritized some or all residents with high-risk conditions above the general public – and South Dakota has begun to give vaccines to people with high-risk medical conditions and disabled people living in group homes, alongside the elderly. Based on California’s current policy, disabled and chronically ill people under the age of 65 may not receive a coronavirus vaccine before the summer.

Alice Wong, a disabled activist based in San Francisco who uses a ventilator and home care attendants full time, said she worries about the permanent consequences that the pandemic will have on Californians who have not been able to leave their homes, and have delayed medical care and treatments for fear of catching the virus. “Not having the vaccine is an existential threat,” she said. “It’s a form of violence against disabled people. It’s eugenics.”

Wong said she doesn’t understand why Newsom’s government could not deliver the vaccine both efficiently and equitably, given that officials had a year to plan and prepare for it. “It angers me that it had to get to this point,” she said.

The governor’s office did not directly respond to a request from the Guardian for a comment, nor did the state’s Covid-19 vaccine taskforce. In a press conference on Monday, Newsom said the state would “take care of the most vulnerable and people in the developmentally disabled community” but added that “whatever we do will not be enough until the [vaccine] supply is adequate”.

Kristen Lopez, a Los Angeles-based entertainment journalist in her 30s with brittle bone disease, said the state’s initial tiered vaccine policy was far from ideal, “but at least it was understandable in some way. There was at least a timeline,” said Lopez.

Her mother, who is Lopez’s in-home healthcare provider, was part of the first tier of care providers who qualified for the vaccine. “As she was saying, it doesn’t make sense that care providers are able to get it, but not all the vulnerable people they’re caring for are.”

“At this point,” Lopez added, “it all just seems arbitrary.”

Being active – good for the mind and the body!

February 15, 2021

This is a guest post.

I recently read about an amazing young man named Oliver Voysey and his efforts to raise more than £178,000 for the activity centre that taught him “nothing is impossible”.

Oliver is just 12 years old and suffered a brain injury shortly after birth. He and his family regularly travelled to the Calvert Trust in the Lake District, an activity centre for both children and adults with disabilities. The Calvert Trust, like many similar activity centres around the country, is facing financial difficulties as a result of the Covid-19 pandemic.

As a solicitor who acts for children who have suffered brain injuries, I am familiar with the crucial work carried out at this type of activity centre and the benefit this has for the children and their families. Children with brain injuries can attend the centres and engage in a wide range of accessible activities in a safe environment with skilled support from people who are experienced in caring for those with disabilities.  

Whether it be climbing, abseiling, caving, canoeing, sailing, cycling, dance, painting, archery, swimming or horse riding (to name just a few of the amazing activities offered!), children who have suffered brain injuries deserve to have the same access and facilities to engage, enjoy, learn and thrive from these activities. Activity centres provide specially adapted equipment and a safe environment for children of all abilities to take part in activities that might otherwise be inaccessible to them.

And it’s not just about having great fun; there can be huge benefits to brain-injured children and their families:

  • Activity and play is essential to a healthy lifestyle for all children. Activity centres allow brain-injured children to exercise in an accessible environment.
  • They provide a safe environment to develop their skills e.g co-ordination, balance, communication, mobility, decision making, self-regulation and independence.
  • Children with brain injuries can socialise with their peers and enjoy activities together, allowing them an important sense of inclusion and a great opportunity to build their social skills.
  • Just like Oliver, who believes that “nothing is impossible”, engaging in physical activities helps boost self-esteem, confidence and resilience in children who have suffered brain injuries.

I have also had the opportunity to visit Penniwells Riding for the Disabled Centre, an activity riding centre for disabled children and adults, where I learnt about the benefits of riding to children with brain injuries. Riding demands physical and mental concentration. It develops balance, promotes core strength and can relax tight muscles, common in children with certain types of Cerebral Palsy, through gentle movement.

Sadly, many of my clients and their families have really struggled throughout the pandemic. Restrictions have meant that they have been unable to engage in their usual rehabilitative activities. Many children who would usually receive crucial support, care, therapy and education from people who are specialists in caring for those children with brain injuries have not been able to. This has left their families in the challenging position of fulfilling all of these roles. This can leave little time to just be a family together!

Further, activities centres have had to remain closed and are now facing financial difficulties as a result. If the centres do not receive the funding they need to stay afloat and reopen when restrictions allow them to do so, some may end up closing for good. This would be devastating to those children and their families who use them, which include some of my clients.

I am in awe of Oliver and his fundraising efforts as well of those around the country who have donated and continue to raise funds to support disabled activity centres through this difficult time. I also hope that the Government and Local Authorities ensure that adequate support is in place to ensure that the centres can reopen for children with brain injuries to continue to benefit from.

Mollie Benjamin, Senior Solicitor in the Brain Injury Team at Bolt Burdon Kemp.

LETTER TO EDITOR: Revitalise share the love of some of their guests this Valentine’s day

February 12, 2021

At a time when there is seemingly much darkness in the world, I’d like to take a moment to share some special words with your readers from Revitalise. As an organisation who usually specialise in providing fantastic holidays and great times for disabled people and their carers, it will come as no surprise that our guest’s happiness means a great deal to us. That’s why, this Valentine’s Day, we want to share a few stories of love, which blossomed at our respite centres.

Finding love is something most of us hope for, but dating with a disability (or when you’re a busy carer) can be really challenging.

Carl Ashcroft and Tracey Stewart first met 15 years ago at Revitalise Sandpipers. They became friends and started to regularly coordinate their visits to the centre, before becoming a couple. In June 2015, we were delighted to witness a very special occasion as Carl took their relationship to the next level, proposing to Tracey at the place where it all began.

Carl said “I really wanted to be surrounded by friends when I asked for Tracey’s hand. Tracey was very surprised but thankfully she said “yes”. Then we had the last dance of the night together.”

“I am very happy”, said Carl to summarise, “so very happy”.

Mavis and Colin’s marriage dates back to 1960, having met at a dance hall and getting married before they were even 18. Mavis became ill with Multiple Sclerosis and Colin cared for her full time, until he was diagnosed with dementia. Mavis said she missed all the things they did before Colin’s dementia got worse and was always wondering when it would be that Colin wouldn’t recognise her.

She said I didn’t know anywhere like Revitalise existed where so much was done to make a break so enjoyable. At Revitalise Colin had been getting up and talking to people, something he hasn’t done for a long time.

“The fun and the laughter was exactly what we needed to get back to who we used to be. We look after each other. We have been married 57 years and are best friends, lovers and partners. Revitalise was just the icing on the cake of our life together so far.”

Revitalise are still welcoming disabled people and carers to Revitalise Sandpipers in Merseyside, for those that have not not been able to access a respite break for nearly a year due to the pandemic. We have funding available and can also provide transport across the country. Anyone who feels they could benefit from our support, only needs to ask.

Devon Prosser, Revitalise
www.revitalise.org.uk  

Charles Hazlewood: Beethoven And Me

February 12, 2021

A multi-talented musician who was once the drummer in a band, Charles Hazlewood has conducted orchestras around the world, taken opera to the townships and villages of South Africa, and founded Paraorchestra, who performed alongside Coldplay at the 2012 Paralympics and have played at Glastonbury. In a new TV documentary, Beethoven and Me (Sky Arts), Hazlewood explores his own obsession with Beethoven, the composer’s mental health and his most famous work, the Fifth Symphony.

We’re on Zoom. I can see blue tiles, a glass ceiling and hundreds of books. It looks as if you’re in a swimming pool library.
That’s nearly right! When we moved to this house in Wells, Somerset, there was a disused pool in a shed in the garden. I realised the combination of wood, ceramic and glass would make a fantastic acoustic for a studio. It’s been a godsend In lockdown. I’ve got my piano, harmoniums, organ, synthesiser, all my vinyl and scores out here. And a wood-burning stove. It’s a joyous place to dream and scheme.Advertisementhttps://22dd77580bf3c028a1a06bab2b9f2607.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

In your TV documentary, you identify closely with Beethoven, which might be considered risky.
You’re dead right, there could be a great level of hubris in trying to suggest that somehow I breathe the same air as Beethoven. I’d never in a million years claim that. However, from when I was a child, aged seven, and got my first Beethoven record – his Archduke Trio, an amazing, compelling piece of music – I’ve had the most tormented and complex and feverish and uncertain and bloody relationship with his music, more so than with any other single artist or music that exists. I was totally obsessed. I’ve performed his work around the world, but always with this fringe dis-benefit, that the process of preparing it takes me somewhere to hell and back – a very bloody, dark, feverish place. It’s as if we, he and I, fight like dogs over the material. The payoff is the ecstasy that comes with performing it.

When you appeared on Desert Island Discs last year, you “came out” – your phrase – as having suffered abuse as a child. Is this key to the documentary?
Yes. My own abuse was sexual. With Beethoven it was brutal, physical, from his violent father. As I began to understand better my own experience, the penny dropped: when you encounter someone else who has been abused – and since Desert Island Discs I’ve received hundreds of letters from like-minded people – it triggers recognition. So many of us are carrying around this dark sump oil buried somewhere within, like a slick, a reservoir. It needs to be talked about, brought out in the open. Whatever the form of abuse, certain similar patterns emerge.

How does this relate to Beethoven?
With Beethoven, in literally every bar, I can smell the hallmarks of abuse. I’ve always had the hunch that Beethoven’s difficulties in life – his mood changes, his personality problems, the way the music works – were about so much more than deafness. I know plenty of deaf people, some of whom are the most gregarious types you’d hope to meet. With Beethoven there’s something more. It’s loud and clear in the Fifth Symphony, and especially when you look at the sketches. At times, his nib goes through three pages of manuscript as he scratches things out. They reveal a man in deep torment, going near insane with frustration. That’s what we explore in this film.

You work with players from Paraorchestra… The Paraorchestra is the world’s first fully integrated orchestra of professional, disabled and non-disabled musicians. I set it up when my daughter, the youngest of my four children, was diagnosed with cerebral palsy, aged 18 months. Her condition made me acutely aware that we ignore so many brilliantly talented people who happen not to fit the standard mould. Some in the orchestra play traditional instruments, others use assisted technology, laptop players – every kind of musician, every kind of music, from Beethoven to Suede to Barry White.

These players are the lucky few, who’ve managed to fight through prejudice and get top-level training. The music industry is in the dark ages in this regard. This is a first step. Even in the UK, a country enlightened towards matters of disability, there are still concert halls where a wheelchair user can’t access the stage. How many conservatoires can teach assisted technology? That’s how fundamental the barriers are. We’re still at ground zero.

You started your musical life as a chorister and then won an organ scholarship to Oxford. Is church music still part of your life?
Absolutely. I love it. I was a chorister from the age of six and it’s a brilliant training for any musician. There’s something about the sound of the organ I’ve always found irresistible. For me it all relates to the buildings, the spaces. When I was organist at Keble [College], it was wild at times. We’d get quite drunk, quite high, then sneak in the chapel at 2am. Everyone would lie on the floor while I went up and did maniacal improvisations on the organ. It was bohemian, decadent, glorious.

What’s defined lockdown for you?
In a way it’s been an amazing time for me. For 30 years I was basically touring the world most of the time, conducting different orchestras. For the first time, I wasn’t doing that. It was like a shedding of skins. Now I’ve realised I don’t want to go back to it. I’ve parted company with my agent and with the orchestras I was working with. All my energies now will go into the Paraorchestra.

Does that mean you’ve detached yourself from the post-Brexit travel issues musicians now face, with the current row over permit requirements?
On the contrary. I’m massively passionate about that. I’ve signed every bloody petition I can lay my hands on. I desperately want the government to sort this out. What are they thinking? Music is virtually our greatest national, and commercial, export. To make it so hard for musicians to travel beggars belief. It makes me want to kill people, actually.

What are you listening to, to keep you sane?
Krautrock, for a start: the German band Faust – pagan sacrifice mixed with the most delicate, meditational music. And the English band Japan. And I’ve got a big obsession with drone music. It’s been a lifelong comfort blanket for me. If everything in life feels precarious, having a fixed pitch which doesn’t yield or bend, whatever’s going on around it, is enormously reassuring. You’re rooted. You’re safe.

Charles Hazlewood: Beethoven and Me is on Sky Arts on Tuesday 16 February, 9pm

ONS Reveals Shocking Stats On Disability, Covid And Death

February 11, 2021

Every single human death is a tragedy. These statistics are not surprising, since we have known the higher risk to people with underlying conditions from the very beginning. However, they do highlight the importance of protecting all disabled people from Covid through first shielding and then vaccination.

Lockdown DJ With CP Has Found Purpose

February 11, 2021

A man with cerebral palsy says he is “loving every single minute” of DJing on video calls for other people with disabilities or those who feel isolated.

Matthew Williams, from Wrexham, said he hoped that once lockdown was over, he would be able to host discos in person.

“The buzz I get from it is unbelievable. It’s not about me, it’s about everyone else, dancing and having fun,” he said.

His mother, Wendy Williams, said his venture had “changed his life and ultimately ours” and that “Matthew has found a purpose “.

LETTER TO EDITOR: Britain’s carers must be prioritised for COVID vaccine or NHS will face disaster, Revitalise say

February 11, 2021

I’d like to take a moment to share some important words with your readers from Revitalise. As an organisation which specialises in providing respite support to disabled people and their carers, we have taken it upon ourselves to ask the Government to prioritise the vaccination of Britain’s army of home carers or risk the NHS becoming overwhelmed if they catch COVID-19.

We are trying to get the message out there that without immunisation at the earliest possible opportunity, carers will no longer be able to perform their caring duties and our hospitals will be inundated. One family carer contracting the virus means at least two people needing extra support, doubling the impact.

We made the plea after the Downing Street press conference on Monday evening in which Health Secretary Matt Hancock claimed the Government was looking “very closely” into where unpaid carers fit in the vaccine prioritisation list, following input from Carers World claiming that unpaid workers still don’t feel recognised.

Whilst unpaid carers are labelled as priority group 6 for the COVID vaccine – recognising the important role they play in supporting the NHS – the reality is that many carers have still not been offered the vaccine, despite many being the sole provider for their loved ones.

There are an estimated 13.6 million unpaid carers in the UK today, of which 4.5 million became carers since the pandemic began. These carers provide vital support, often around the clock, relieving enormous strain from the NHS.

One carer, Hilary, has been looking after her disabled son, Shaun, for 15 years following an accident during a holiday in Ibiza, despite herself having emphysema, chronic kidney disease, and a problem with her aortic valve. Hilary has faced enormous challenges since the start of the pandemic, and has yet to be offered the COVID-19 vaccination. She is forced to turn down any care support she is offered, as she knows it increases the risk of her or Shaun catching the virus.

We would like your readers to know that we are welcoming disabled people and carers through the doors of our Revitalise Sandpipers centre in Merseyside, in an attempt to circumvent some of the immense pressures facing unpaid carers, who have not been able to access a respite break for nearly a year due to the pandemic. We have funding available to subsidise your break, and can also provide transport across the country.

The pressure is continuing to build for these carers, with no end in sight. Anyone who feels they can benefit from our help, only needs to ask.

Devon Prosser, Revitalise
www.revitalise.org.uk  

George Julian- Live Tweeting LD Inquests

February 10, 2021

George Julian is crowdfunding to attend coroners’ courts and live-tweet the inquests of people with learning disabilities and autism.

She says she does this to bear witness to those individuals and to raise awareness of how they died.

In the UK, people with learning difficulties tend to die more than two decades younger than non-disabled people.

Campaigners say many of these deaths are preventable, and come about because of poorly-managed care.

A Global Report On Disability Rights During The Pandemic

February 10, 2021

This might be of interest to some of you.

PIP Reading And Budgeting Points For Claimants With Apparently Good Literacy And Numeracy

February 10, 2021

With many thanks to Benefits And Work.

 

An upper tribunal judge has made findings which will help some claimants show they qualify for PIP points for difficulties with reading and with budgeting, even if they have an apparently high standard of literacy and numeracy. The claimant was represented by an advice worker who also volunteers for Benefits and Work. 

Reading
The claimant in this case was assessed as being ‘borderline on the learning disability range’. It was found she could read simple words, recognise road signs and fire escape signs and recognise the packaging of her medication.On this basis a tribunal found that she could read and understand basic and complex written information and therefore scored zero points for the activity Reading and understanding signs, symbols and words (see the list of descriptors for reading and budgeting at the bottom of this article)..

The legal definition of ‘basic written information’ for PIP is signs, symbols and dates written or printed standard size text in your native language.

‘Complex written information’ means more than one sentence of written or printed standard size text in your native language

The judge held that the descriptors clearly require an ability to read some actual words, not just symbols and numbers. So, the claimant would need to be able to read a date written as, for example ‘Friday January 31’.

The judge also held that the ‘basic written information’ in question must convey something useful, explaining that:

“basic written information”, whilst indeed basic, is nonetheless concerned with matters of real practical utility and that the bar must not be set so low in interpreting the phrase so as to be testing only an ability of no practical consequence.”

The judge ruled that the word ‘sign’ does not refer to, for example, a printed arrow meaning go to some other part of a leaflet. Instead, the definition refers to the ability to read words on a printed, rather than handwritten sign, such as ‘Caution – electric fence’ or ‘Park closes at 5.30pm’.

The judge struggled to find any way in which prompting – defined as reminding, encouraging or explaining – could be of relevance to this activity, pointing out that:

“Explaining” what a piece of basic written information is, so that the person does not need to read it, is not prompting them to read it.”

Perhaps most importantly, the judge pointed out that any reading must also be done reliably, meaning:

(a) safely;
(b) to an acceptable standard;
(c) repeatedly; and
(d) within a reasonable time period.

The judge held that “For people without difficulties in this area, reading a short sign will be almost instantaneous.”

However, many people diagnosed with conditions such as Autism Spectrum Disorder (ASD), Attention Deficit Disorder (ADD) or a processing disorder may have difficulties with visual processing, language processing, short-term working memory, concentration, focus and other issues. This may mean that whilst they have a high standard of literacy they take in written information more slowly and may process it differently and may also need to read it repeatedly in order to put it into the correct context.

Even a small delay in reading basic or complex written information would be enough to show that it takes “more than twice as long as the maximum period that a person without a physical or mental condition would take”.

Where complex written information is concerned, conditions such as language or visual processing disorders or difficulties focusing may mean claimants with conditions such as ASD or ADD have problems following meaning without repeated reading. They may also have difficulty retaining complex information for long enough to act upon it.

So, even though they would have no difficulty in reading the words aloud, for example, they are unable to understand complex written information to an acceptable standard.

Finally in relation to this activity, the judge held that ‘Cannot read or understand signs, symbols or words at all’ does not mean that the claimant cannot read any words, but that they cannot read the basic written information at issue in this activity.

Budgeting
In this case the claimant scored no points, with the first-tier tribunal finding that they could manage complex budgeting decisions unaided because, amongst other things:

“She goes to the bank to get money out. She pays different sums on two cards and her TV licence is separate. She has a direct debit to pay for a charity contribution. She did state that she asked for help in the bank. She knew she got paid every fortnight. She knew that 24 tins of dog food costs £8.50, although she claimed not to know the change. Her taxi is £3.50 and she gives the driver extra for a drink. The [appellant] exhibited a good degree of knowledge regarding her finances and how they are paid.”

As with reading, there are important legal definitions for this activity.

Simple budgeting decisions” means decisions involving –
(a) calculating the cost of goods; and
(b) calculating change required after a purchase;

Complex budgeting decisions” means decisions involving –
(a) calculating household and personal budgets;
(b) managing and paying bills; and
(c) planning future purchases;

The judge held that the requirements in the definitions are cumulative, the claimant must be able to do each of them.

So for simple budgeting the claimant must be able to both calculate the cost of goods and then calculate how much change will be given to meet the descriptor.

The judge held that calculating is not the same as knowing. In this case, the judge explained:

“The appellant is said to “know” that 24 tins of dog food cost £8.50. That is not a matter of calculation unless, for instance, 12 tins are known to cost £4.25 and the cost of 24 has to be worked out.”

For complex budgeting decisions there are, in fact, five activities that the claimant must be able to complete:

Calculating household budgets
Calculating personal budgets
Managing bills
Paying bills
Planning future purchases

The judge held that just paying bills is not sufficient, the claimant must also be able to ‘manage’ them, which could include such issues as “prioritising which bill to pay in the light of competing demands, or the need to avoid or minimise late payment charges, or the need to take stock of bills which will inevitably be coming up and to plan accordingly”.

The judge also held that:

A “household budget” may well be more complex than a “personal budget”, with housing costs, utility charges and possibly the finances of others to be factored in”.

It is clear then, that complex budgeting decisions are indeed complex.

For all the reasons given above for reading, claimants with conditions such as ASD and ADD may well take more than twice as long to make simple budgeting decisions, especially where anxiety is also a part of their condition and may be made more pronounced by being in a public space and amongst strangers.

Complex budgeting require a great deal of focused attention and the ability to think ahead about a number of different possibilities in order to make decisions to an acceptable standard and in a reasonable time period.

This will clearly be an even greater challenge for claimants with ASD, ADD or similar conditions, as these often coexist with executive function difficulties which affect organisational skills, the ability to think forward into the future and difficulties with the concept of doing things within a specific timeframe.

In many cases, claimants may have had a budgeting system, including direct debits and standing orders set up for them and would be unable to take effective action if, for example a payment into their account was delayed.

The more evidence, including examples, that the claimant can provide that they cannot reliably carry out any one aspect of these activities, the better the chance that they will eventually be given the correct award of PIP. Even if they have to go all the way to the upper tribunal to get it.

In this case, the judge is awaiting further submissions before making a final decision.

You can   download a copy of CPIP/1653/2019 from this link.

8. Reading and understanding signs, symbols and words.
a. Can read and understand basic and complex written information either unaided or using spectacles or contact lenses. 0 points.
b. Needs to use an aid or appliance, other than spectacles or contact lenses, to be able to read or understand either basic or complex written information. 2 points.
c. Needs prompting to be able to read or understand complex written information. 2 points.
d. Needs prompting to be able to read or understand basic written information. 4 points.
e. Cannot read or understand signs, symbols or words at all. 8 points.

10. Making budgeting decisions.
a. Can manage complex budgeting decisions unaided. 0 points.
b. Needs prompting or assistance to be able to make complex budgeting decisions. 2 points.
c. Needs prompting or assistance to be able to make simple budgeting decisions. 4 points.
d. Cannot make any budgeting decisions at all. 6 points.

PIP Extension Letters Closely Followed By Review Forms

February 10, 2021

With many thanks to Benefits And Work.

 

The flood of PIP award extension letters we highlighted a fortnight ago is being followed, sometimes within days or weeks, by review forms for some claimants. Others have received extension letters which wrongly reduce the length of the award and one member has warned of issues with Motability vehicles.

Last month we revealed that around 850,000 PIP award extension letters were being sent out by the DWP, with awards typically being extended for 9 months.

It seems though, that in some cases the extension letter is being closely followed by a PIP review form which may be due to be returned before the original award has even ended, leaving claimants feeling that the extension wasn’t so much of a boon after all.

One commenter told us:

Many including me rec’d an extension letter mine came last sept extending my pip award from mar 21 to Dec21. My renewal forms arrived last Thursday they needed to be back by 8/2 -a month before my original end date. Many others have had the same experience

Another said:

I had the same letter in December 2020 extending to December 2021 so heaved a huge sigh of relief as this comes in every 2.5 years usually having a month to fill out over Christmas. I received a smaller form to update my conditions and can’t believe it’s due in 3 weeks when my original PIP didn’t end till May 2021.

Yet another commentor wrote:

I received the same letter in November last year, but in December I received a further letter and the review forms which had to be completed and returned!!

A poster on the forum told us:

Good morning, please can somebody help , I had at letter in say my pip. Was to be extended for a further 12 months . Then 2 days later , I’ve had a renewal form come in

Some people are receiving extension letters which give a date earlier than the actual end of their award, seemingly shortening instead of lengthening it. One poster in the forum said:

I know other people have been receiving PIP extension letters. I have now received one, with an extension date of July 2023. However this extension date is sooner than the actual award length expiry date. Are these extensions letters with July 2023 going out to everyone automatically without the DWP checking exactly when peoples actual awards are ending?

Another commentor said:

We had stress this week. My husband got his award in 2019 for 10 years. We got this letter saying because of Covid his award will be reassessed in NOV 2022!!! Rang up and they didn’t know why as their computer said ongoing period from 2019… After a week of waiting they said a sentence was missing from the original letter!!! But all sorted and renewal date is Feb 2029. What stress! I’m sure they do it deliberately to unnerve you. All he wants is to be Ill n peace!

Another commentor warned of a different problem:

There’s a sting in the tail with these letters though. Anyone with a Blue Badge will have to re-apply for the badge and entitlement to that new badge will end at the same time as the extended PIP date. My motability car is also due for replacement but can’t be because the extension doesn’t cover a three year period. Whilst not having to worry about PIP renewal applications for a few more months, this extension is not without it’s own problems.

DWP Denies Disabled Claimants Need More Help, Despite Evidence

February 10, 2021

With many thanks to Benefits And Work.

 

The DWP has rejected the idea that disabled claimants have incurred additional costs during the pandemic, despite mounting evidence, and has refused to name a date when a long overdue report into the link between government policy and foodbank use will be published.

A report, Pandemic Poverty, released this month by the Disability Benefits Consortium (DBC) found that:

  • 82% of disabled claimants have had to spend more money than they normally would during the pandemic.
  • This is most commonly due to greater food shopping and utility bills, as over half (54% and 53%) of disabled claimants said these costs had increased significantly.
  • As a result of these increased costs, two thirds (67%) of disabled claimants have had to go without essential items at some point during the pandemic.
  • Almost half (44%) of disabled claimants are reporting being unable to meet financial commitments such as rent and household bills.

The DBC recommend that:

  • The £20 per week increase to be extended to legacy and similar benefits (and backdated to April 2020).
  • The £20 uplift to universal credit (UC) be also renewed in 2021-2, above the normal inflation uprating.

Meanwhile, a separate report by the Trussell Trust, Dignity or Destitution, is also calling on the government to keep the £20 uplift when it is reviewed next month.

Research conducted by YouGov on behalf of the Trussell Trust finds 41% of people claiming Universal Credit – representing more than 2.4m people across the UK – fear they will be very likely to cut back on food for themselves if the planned cut goes ahead in April.

13% of parents surveyed – representing more than 220,000 families – think they would be very likely to cut back on food for their children, meaning they simply would not have enough money to cover the basics.

The report forecasts an increase in the need for food banks amongst people claiming UC with 20% of people on UC -representing 1.2 million people – saying they would ‘very likely’ turn to a food bank for help with £20 less a week.

Emma Revie, chief executive at the Trussell Trust, said:

“The £20 increase to Universal Credit introduced at the start of the pandemic has been vital in protecting tens of thousands of people from being swept into serious financial hardship. This survey reveals the shocking consequences of what lies ahead if this lifeline is cut in April. This isn’t right. No one should have to suffer the indignity of relying on emergency food. It’s clear that action is needed to ensure our benefits system provides people with enough money to cover the essentials. That’s why we’re insisting the government turns this situation around. Keeping the £20 Universal Credit uplift, and extending it to legacy benefits, will provide an anchor from poverty for people who need it most.

The chances of the DWP increasing payments to legacy benefits claimants, seems slim, however.

When it was pointed out to DWP secretary of state, Therese Coffey, during a meeting of the Work and Pensions Committee last week that disabled people have borne higher costs during the pandemic, but those on ESA and JSA have not had any extra help at all, Coffey replied dismissively:

“I would not say they have been treated badly . . . I am not aware specifically of extra costs that would have been unduly incurred”

Coffey also refused to say when a report into how government policy contributes to foodbank demand would be published. It was due out in September 2019, but has been supressed ever since. Coffey’s only response was to say that:

“I do not have a specific answer on that single report, but if they are contributing to policy formation we will still have them under review.”

Coffey’s utter indifference to the plight of disabled claimants suggests there is little prospect of legacy benefit claimants receiving any additional help, without a huge surge of pressure being placed upon the government

You can download Pandemic Poverty form this link

You can download Dignity or Destitution from this link

You can download a copy of the Work and Pensions Committee meeting from this link.

Down’s Syndrome: Mother Says She Wouldn’t Change A Thing

February 9, 2021

A mother who broke down after her son was born with Down’s syndrome wants other parents of babies born with the condition to know things will be “more than okay”.

Kassie Carlyle knew “instantly” that baby Carlson had the condition when he was born in November 2017.

She said it left her feeling like she “had been punched straight in the gut”.

Now she wants to reassure other parents struggling with the same diagnosis that support is available.

The mother-of-three, 42, from St Anne’s in Bristol, still remembers how distraught she was when she saw Carlson for the first time after giving birth at Southmead Hospital.

“I went into shock straight away and I handed him to my husband and mum. I just couldn’t hold him,” she said.

“My husband didn’t notice he was any different. The pride on his face made me feel so guilty.”

She remembers feeling “floored” and asking everyone to go home.

She did not tell her husband Chris her concerns because she was afraid to “take away that happiness I saw in his face”.

She said she will “always be jealous he left the hospital a proud dad full of joy… for me it was was an upsetting moment and I didn’t want to talk to anyone”.

During their first night in the hospital, Mrs Carlyle “cried all night” while cuddling her newborn.

“I held him against my chest to keep him warm as his temperature was too low and he wasn’t well.”

She asked for Carlson to be checked the next day and a test later confirmed he had Down’s syndrome. The possibility of him having the condition had not been considered as she had not been flagged for pre-natal testing.

Mr Carlyle, 49, cried when she told him but said he thought they were “lucky, because we get to take our baby home”.

He was worried about Carlson being “an easy target for the evil in this world, but otherwise he’s his son and no different in his eyes”.

Mrs Carlyle said her family was very supportive and her mother was her “rock”.

“She told me that Carlson would be a blessing to our family and that I would see in time he was exactly who he was meant to be.”

‘Overwhelmed with fear’

Following the diagnosis, Mrs Carlyle was given “old-fashioned looking leaflets and told lots of things my tiny baby wouldn’t be able to do or what he would struggle with.

“I didn’t feel prepared at all, I felt overwhelmed with fear.”

With no positive advice on having a child with Down’s syndrome, she spent the first days feeling “broken” and was assigned a mental health nurse.

“I will always feel the guilt of feeling they were among the worst days of my life.

“I knew I loved my little boy but I was so fearful for his future.

“It was hard to tell everyone because I expected the negative reaction but… my family and friends all came to the hospital and rallied around to show their love and support. They love him so much.”

When Carlson’s siblings met him they instantly loved their baby brother, she said.

“When I told my daughter Chennae, who was 10, she named him ‘our little rainbow of uniqueness’ and their bond is so tight.

“My other son, Clayton, doesn’t understand what Down’s syndrome is and says Carlson is his best friend and the reason why he’s happy every day.”

Mrs Carlyle recognises the struggle of new parents in lockdown, particularly those who receive a shock diagnosis, and said of her time in hospital: “I simply would not have survived without my family [being able to visit me].

“They picked me up when I was broken and loved my little boy when I was unable.”

Drawing on her own challenges in the early days, Mrs Carlyle knows the value of positive advice rather than just being given restrictions.

“I just want a more realistic and balanced view into the life of living with a child with Down’s syndrome.”

“Seeing into the real lives of other families is what helped me see that it wasn’t doom and gloom at all, in fact far from it.

“Meeting other mums who knew how I felt and didn’t judge me for those feelings really helped, because unless you’ve been in this situation I don’t think you can understand how it hits you.”

Because of the restrictions during lockdown, Mrs Carlyle wants other families to know there is a lot of online support for new parents when they are ready to reach out.

“It took me quite a few months but I wish I hadn’t wasted those precious early days in a state of worry and depression because if I could rewind the clock I would do it so differently.

“There is an amazing community ready to welcome you and support your journey and they become like family.”

Celebrate your baby

She advises other parents: “Don’t be hard on yourself for any of the feelings you may have as it’s only natural to worry.

“For new mums dealing with a shock diagnosis, the first thing I would say is ‘congratulations… take your baby home, love them… take each day as it comes and stay in the present.

“Celebrate your beautiful baby, put those cards up and get ready for your life to be made extra special!

“Carlson has taught me that the extra chromosome doesn’t define him or anyone else, it is an added extra that makes him extra special.”

‘Wouldn’t change a thing’

Three-year-old Carlson is now in mainstream nursery, has lots of friends and loves learning.

He models with Zebedee talent agency – which represents children with disabilities – and has recently been announced as an ambassador for the ‘Wouldn’t Change a Thing Charity’ which tackles “negative, outdated perceptions of Down’s syndrome”.

The charity has made a book for new parents or those who are given a pre-natal diagnosis of Down’s syndrome.

Carlson and his siblings feature in that book and Mrs Carlyle said: “It would have been lovely to receive such a beautiful book instead of the literature I was given.”

She added: “We place no limits on Carlson… he keeps making us all proud by smashing life, proving that he is capable of anything… and breaking down stereotypes and negative perceptions people have about Down’s syndrome and disabilities in general.

“He was the missing piece to complete our puzzle. We really wouldn’t change a thing. He is my perfect son.”

Approximately 750 babies are born with Down’s syndrome each year in the UK.

The Down’s Syndrome Association offers support and advice for new parents on its website.

Covid: Vaccine ‘Life-Changing’ For Doctor With Genetic Disorder

February 9, 2021

A former consultant who has been shielding with her family for 11 months says getting the Covid vaccine will “set all my family free”.

Dr Victoria Lidstone said receiving the vaccine at the weekend meant she was “finally able to think about putting my arms around those that I love”.

The 50-year-old from Cardiff has Andersen-Tawil syndrome and said she had taken Covid extremely seriously.

She lost her mother to the same disorder when she was a young adult.

The rare genetic disorder can mean episodes of muscle weakness and paralysis.

‘One long lockdown’

The former palliative care consultant said losing her mother meant she felt she had “missed out on so much since by not having her around”.

She said: “I didn’t want that for my children.

“I want to be there for them so as a family we have taken Covid extremely seriously, we have shielded as a family and been really careful for nearly a year.

“To say this hasn’t been easy for my three kids in their late-teens to do this is putting it mildly.

“Lockdowns haven’t really made a difference to us – it’s been one long lockdown and the vaccine will set all my family free.”

‘On their knees’

Dr Lidstone stopped work in her early-40s because of her medical condition but still has many friends in the NHS and her husband is an NHS consultant.

“As a doctor myself I do have an idea of what my colleagues are going through right now, and it’s not good,” she said.

“I have lots of friends in the NHS who have been working on this treadmill since last spring – the phrase, ‘working like there’s no tomorrow’ comes to mind…

“I can’t help, except with the odd phone call…

“My mates keep on keeping on for me, for you, for everyone – they are exhausted, mentally and physically.”

She has now launched a fundraising campaign to raise money for NHS Charities Together.

“The NHS staff are on their knees,” she said.

“There is no getting away from that fact. They have been exhausted for months. It’s the least I can do to raise some funds to improve their kit and staffing levels.

“Whilst I look forward to my life massively improving, and the prospect of surviving Covid if I catch it, the NHS staff will continue to work day-in-day-out for all of us.”

Tara Bostock’s Family Call For Research Into LD Covid Death Rates

February 8, 2021

The family of a woman with Down’s syndrome who died after contracting Covid-19 are calling for more research into how the virus affects people with disabilities.

Tara Bostock, 51, from Barlestone in Leicestershire, died despite having self-isolated, her family said.

Research has found people with learning disabilities are more likely to die from Covid.

Ms Bostock’s family described the death rate as “astonishing”.

‘Appalling loss’

Ms Bostock – described by her family as “a joy to be around” – lived with her sister and was waiting for a vaccine before she died on 21 January.

Her relatives said she was “the most beautiful, loving person”.

Niece Rebecca Barnes said people with learning disabilities needed to be vaccinated faster.

“I completely understand the elderly are very vulnerable,” she said.

“They need to be looked after, but there are other people that need looking after as well.

“The figures are astonishing [concerning] how many people are dying with learning disabilities.”

According to Mencap, 80% of deaths of people with learning disabilities in England in the week up to 22 January were Covid-related.

Dan Scorer, from the charity, said a lack of access to health services and a lack of social care have been factors in the “appalling loss of life”.

“People have struggled to understand the complex and ever-changing rules they’ve needed to stay safe,” he said.

Ms Barnes’ family are holding a number of fundraising events in her memory to support two social clubs that she attended.

Teacher With Tourettes Describes Distressing Vaccination Experience

February 8, 2021

COVID’s Disabled Victims | People And Power

February 8, 2021

Sia Says Sorry To Autism Community For Controversial Film Music

February 5, 2021

Australian pop star Sia has apologised for casting a neurotypical actor as a nonverbal autistic girl in her film Music, and for scenes depicting the use of restraints on autistic people.

Her directorial debut Music attracted controversy online on Wednesday after it was nominated for two Golden Globes.

It was criticised for the casting of dancer Maddie Ziegler in an autistic role, as well as for restraint scenes.

Sia has now said a restraint warning would be added to the film’s start.https://emp.bbc.co.uk/emp/SMPj/2.39.15/iframe.htmlmedia captionWhy has Sia been criticised for her new film?

Variety said the singer had also tweeted that all restraint scenes will be removed from public screenings of the film.

“I plan to remove the restraint scenes from all future printings. I listened to the wrong people and that is my responsibility, my research was clearly not thorough enough, not wide enough,” she tweeted, shortly before deleting her account which had about 6m followers.

“I promise, have been listening. The motion picture Music will, moving forward, have this warning at the head of the movie,” she said.

She added: “Music in no way condones or recommends the use of restraint on autistic people. There are autistic occupational therapists that specialise in sensory processing who can be consulted to explain safe ways to provide proprioceptive, deep-pressure feedback to help w[ith] meltdown safety.”

On Wednesday, actress Ruth Madeley, who has spina bifida, expressed solidarity with “every #ActuallyAutistic person who is rightly devastated to see #Sia”s Music nominated”.

“Disabled people are needed in the industry now more than ever to help change the narrative we’re all so sick of,” tweeted the actress, who was in 2019 BBC drama Years and Years and has featured in BBC One’s Celebrity Best Home Cook.

A tweet from GhillieGuide, an “austistic self-advocate”, said the use of restraint in the film brought back “traumatic memories”.

The film, written and directed by Sia, also stars Kate Hudson and Leslie Odom Jr, and will be released in certain cinemas around the world for one night only next week.

It received a Golden Globe nomination for best picture in the musical or comedy category, along with Kate Hudson, who got a nod for best actress.

In November a petition to cancel the film, which Sia described as “a love letter to caregivers and to the autism community,” went up online.

Speaking recently on the Grounded with Louis Theroux podcast, Sia agreed with him that the challenges and experiences for people with autism are varied, and said she wanted that to be reflected on screen.

“Sometimes it’s coupled with savant capabilities and other times it is not,” she said. “If you went and met everybody in the world who is on the autism spectrum you would never find two the same.”

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Analysis

By Drew Miller Hyndman, disability reporter, BBC Ouch

Autistic people were speaking out against Music the day it was announced, with complaints focused on the stereotyping of autistic people and the decision to cast Maddie Ziegler, a non-autistic actress, as the autistic lead character.

The strong feelings behind these complaints were exacerbated when Sia engaged directly with autistic people on social media.

In one tweet, she even called one a “bad actor”, a moment that has come to sum up this film for autistic people.

For many in the autistic community, Sia’s apology is being seen as too little too late, and the damage has been done.

Covid: Blind Woman’s Shielding Case Granted Judicial Review

February 5, 2021

A blind woman taking legal action against the government over claims they did not give her accessible information on shielding has been granted a judicial review.

Sarah Leadbetter said the government sent her letters in a “tiny” font rather than in a format she can access like email or audio files.

The 45-year-old said the review showed how “important” the matter was.

The government said it remained focused on protecting the most vulnerable.

Ms Leadbetter – who is classed as clinically extremely vulnerable – has a genetic condition that affects her immune system, is in remission from cancer and lives with her elderly parents who also have health issues.

She said she only discovered she was on the Shielded Patients List because her mother, who is also shielding, received the same letter and told Ms Leadbetter.

Her solicitors said this breaches duties under the Equality Act 2010 and the Accessible Information Standard.

Ms Leadbetter, from Narborough, Leicestershire, previously said formats like an audio CD or emails with voiceover capability were preferable to Braille and large type.

She said it was “wonderful” a judicial review had been granted.

Ms Leadbetter added: “This shows how important it is that blind people, not just me, should get information in an alternative format.

“This change needs to happen.

“The issues I face are not unique to me, they are commonplace among blind and partially sighted people. We feel as if we are treated like second-class citizens.”

Solicitor Kate Egerton, who is acting for Ms Leadbetter, said the Department of Health and Social Care (DHSC) refused to provide sight impaired people with communications regarding shielding in their preferred format.

She said: “The DHSC argue that their failure to do so is not unlawful because there is no substantial disadvantage to sight impaired people in receiving hard copy letters, and that it would be too difficult logistically to provide sight impaired people on the shielding list with their preferred formats.

“Clearly, not being about to access information about shielding puts people’s own health – and that of their families – at significant risk.”

A department spokesperson said: “The government remains focused on protecting the most vulnerable in our society.

“We have issued guidance for the clinically extremely vulnerable with information on how they can keep themselves safe during the restrictions, and this, along with a wide range of public health guidance, has been made available in a variety of formats.

“Letters detailing shielding advice for the clinically extremely vulnerable are also available in a range of formats and languages, and are also sent by email where an individual has registered an email address with their GP practice.”

The judicial review is due to take place at the High Court in March.

Covid’s Harmful Effect On Disabled People’s Activity Exposed By Survey

February 4, 2021

Covid-19 has reversed progress made in levels of activity among disabled people, according to a new report, amid concerns the gains may not be recovered because of the scarifying effects of the pandemic.

The observations come in the second Annual Disability and Activity Survey, which measures participation and attitudes towards physical activity among disabled people. Conducted by the disability charity Activity Alliance, it is seen as a companion to Sport England’s Active Lives study.Leading Paralympian says lockdown needs of disabled people ignoredRead more

The survey found that before the onset of Covid the number of disabled people who said they were physically inactive had fallen to 34%, down from 41% the year before. This corresponded with an 18% rise (from 40% to 58%) in the share of those who said they had “the opportunity to be as physically active as they want to be”. Following Covid, however, that number has fallen back to 39%, with the need to self-isolate the most common reason given, alongside a fear of contracting the virus.Advertisement

According to the chief executive of the Activity Alliance, Barry Horne, this change reflects the disproportionate impact Covid has had on disabled people. “Two thirds of people who have died from Covid are classed as disabled people,” Horne said. “What this survey shows and the Active Lives survey shows is that they are disproportionately impacted in terms of activity levels, too.

“There are external factors such as the lockdown but there’s also logistical factors in terms of being able to connect with the people who might help someone to exercise. You’ve also got the crisis within sports activity providers where they’re able to do a lot less.

“Finally the big thing that comes out is where disabled people are coming from. They’re more fearful. The proportion of disabled people who fear catching Covid is significantly higher than the wider population.”

With the leisure industry in financial crisis, Horne insists whatever provision remains post-Covid must be focused first on those who need it most.https://www.theguardian.com/email/form/plaintone/the-recapSign up to The Recap, our weekly email of editors’ picks.

“When I talk about inclusive practice it’s not just about the provision it’s about how you engage people’s psychological concerns and make it feel relevant for them”, he said.

“The resource will be what it is, the access to it is what matters. There are mechanisms through which it can happen but the reality is that this agenda has not been prioritised. We were starting to, however, and that’s my bit of optimism.”

Young Shielders: Covid Vaccine Is A Ticket Back To Normal

February 4, 2021

I was out walking my dog last March when I received a text telling me I was clinically vulnerable and needed to start shielding immediately.

Being totally honest, I burst into tears when I saw it – knowing I wouldn’t be able to go out for a walk or a run, or even go to the supermarket.

I’ve had an auto-immune disease since the age of ten and take immunosuppressants, which have controlled it really well and let me lead a relatively normal life.

But one thing I’ve always struggled with is my weakened immune system. Before lockdown I’d get common colds that would knock me out for weeks and constantly need antibiotics for various infections I pick up.

I’d certainly let myself wonder about what would happen to me if I did catch coronavirus and working as a journalist every day certainly didn’t help that feeling of anxiety.

So when I got a text last week offering me the chance to book in my first vaccine, I was absolutely overjoyed.

I immediately texted my parents, my sister and my friends – it felt like the biggest thing that had happened to me in a long time.

As I walked to the vaccine centre on Saturday morning (in my new trainers and a full face of make-up, because why not?), I allowed myself to dream.

I thought about all the things I used to take for granted, but now miss so much.

Spontaneously planning a night out three hours in advance. The excitement you get before going to a gig. The countdown and frantic packing days before a holiday. Not that we can do any of that just yet – but still, it’s good to dream.

A paramedic gave me the jab and handed me a card with my batch number on, which now felt like the most precious thing I owned.

It was my ticket to a return to normal life.

I called some fellow twentysomethings who’ve also had to shield and have got the jab.

El Afzal is a 24-year-old from Manchester, whose severe asthma and skin condition have meant she’s also had to shield.

“Everyone’s struggled with lockdown but when you’re clinically vulnerable there’s a different stress level,” she says.

“I was getting all the texts and letters from the government telling me I was more likely to get severe Covid and that’s been really hard in terms of anxiety.”

‘I can sleep through the night’

El found it very tough seeing her friends going out – even in a limited, socially-distanced way.

“It feels like a big kick in the face when you’re sat at home and you can’t even go to the shop.”

She says her experience of trying to get the vaccine was tough at first because her health conditions meant she couldn’t receive the Pfizer jab.

“I’ve had the Oxford one now and I’m really grateful that I’ve been able to have it at this point and at least get my first jab.

“There’s a sense of relief and I can sleep through the night and actually know I’ve done everything that I possibly can to ensure I’m as safe as possible,” she says.

“I remember sitting down with my family eating lunch and my mum looked at her phone and she’d got the text – I had my phone charging in the other room and I went to grab it.

“It was incredible to see that message – I was absolutely buzzing.”

Georgie Hodges is a 20-year-old student from London who has been shielding since the start of the pandemic due to a genetic condition. She says lockdown’s had a really bad impact on her education and social life.

“My attention span has completely dropped in the last year and I can’t sit down and focus – I also have joint pain and mobility issues,” she says.

Georgie, along with her key worker parents, has received the first dose of the vaccine but doesn’t expect her life to suddenly change, even when restrictions are relaxed.

“I won’t be going out as normal until I get the second part but I’m actually quite overwhelmed with what to do,” she says.

“I find going out for a walk quite overwhelming at the moment, so as much as I’d love to say I’ll be going out with my friends, I don’t know what I’ll do.”

But Georgie says she “can’t put into words” how it feels to know that she’s on her way back to a normal life.

“It’s finally light at the end of the tunnel.”

Covid: Captain Sir Tom Moore ‘Inspired Me To Walk Through The Agony’

February 3, 2021

A paralysed 999 call handler has walked one lap of a football pitch in honour of Captain Sir Tom Moore.

Sean Ash, 39, from Bexley, south east London, was told he would never walk again after being diagnosed with a rare spinal condition in August.

However, after months of therapy, he was able to walk small steps with the help of a walking frame.

Mr Ash said he would “keep walking for him as long as I can” in memory of Capt Sir Tom.

He completed a lap of Millwall’s pitch on Tuesday to raise money for the NHS.

He said: “Every step that I take, all the pain and agony that I go through, it’s all for something bigger than myself.”

“I’m walking for everyone that has a spinal cord injury. I’m walking for all our NHS heroes.”

In January Mr Ash raised almost £60,000 for his London Ambulance Service and NHS colleagues after walking a mile around the roads surrounding his home.

He said he was inspired by 100-year-old Capt Sir Tom’s fundraising efforts.

“I want to inspire the nation to get up and walk for Tom.

“There was a time when he got up and walked for us when we needed him,” said Mr Ash.

Capt Sir Tom previously described Mr Ash as an “inspirational young man”.

Mr Ash is paralysed from the waist down due to cauda equina syndrome (CES) – a rare type of spinal stenosis where all of the nerves in the lower back suddenly become compressed.

Although he has completed the walk recovery will be painful he said.

“A lot of people see me walk around here and think that’s the challenge. But the challenge is now when I get home and I’ve got to recover somehow.

“But it was worth it.”

NI Special School Staff To Get #VaccinePriority

February 3, 2021

Some staff working in special schools in Northern Ireland will be prioritised for vaccination against Covid-19.

The move comes after an agreement between the Departments of Health and Education.

The proposal from Education Minister Peter Weir had previously been discussed by the executive.

BBC News NI understands that staff involved in giving direct care to children with the most complex needs in special schools will be prioritised.

However, it is not yet clear on what date they will begin being vaccinated.

It is also not clear if all staff in special schools will be prioritised, or just some staff.

In England, there have also been calls for teachers to be vaccinated against Covid-19 once the most vulnerable have received their doses.

In Northern Ireland, the agreement between the Departments of Health and Education is only with regard to those working in special schools.

Special schools have remained open for all pupils since the start of January, while most pupils in pre-schools, primary and post-primary schools are learning remotely.

Weekly Covid-19 testing for staff and pupils in special schools is also due to begin in February.

“Staff working in special schools are supporting children and young people who have the most complex healthcare needs and require support from across the health and education sectors,” Health Minister Robin Swann said.

“It is with this in mind that we have made the decision to offer the vaccine to those staff involved in the direct care of these children and young people.”

The departments of health and education will now work to identify staff in special schools who should be offered the vaccination first.

Staff who are in close contact with multiple children and young people for prolonged periods, and those who offer personal and intimate care are those likely to be prioritised for vaccination.

Education Minister Peter Weir said he hope the move would “help to ease the anxiety of parents and carers as well as staff working in special schools”.

Sinn Féin assembly member Colm Gildernew said the ministers and departments “now need to work along with the Education Authority, school staff and their representatives to take this forward so these important workers can be vaccinated as soon as possible”.

RNID launches new drive to silence tinnitus for good

February 3, 2021

A press release:

This Tinnitus Awareness week (1st – 7th Feb), RNID are launching a new drive to encourage more people to back vital research into tinnitus. The charity is already funding research into new treatments which could lead to millions of people with tinnitus being helped but we need your support now more than ever. 

Dr Ralph Holme, Director of research at RNID said;

We are learning more about the biology of tinnitus every day and exploring new ways to treat it. The progress being made gives us real hope of breakthroughs in the next few years that will bring us closer to effective treatments. In order to achieve this we need your continued support.

RNID, the national charity making life fully inclusive for deaf people and those with hearing loss or tinnitus, is raising awareness of tinnitus and calling on supporters to help fund more research to help silence it forever.

Tinnitus is a ringing, hissing, roaring or any other sound in one or both ears or in the head, which has no external source. It is most frequently associated with exposure to loud sounds that damage the ear and ultimately cause changes to the brain.

Many of us will have experienced temporary tinnitus after a night out at a concert but for some people, tinnitus is permanent. 7.1 million people – that’s 1 in 8, have tinnitus in the UK. For many people it can cause serious anxiety and stress and in some cases lead to depression and sleep disorders.

Rich, 32, a teacher said his tinnitus started eight years ago.

“The first time I noticed it I was driving home from work. I could hear a whistling noise and I thought there must be something wrong with the car. It felt like the window was open slightly so made sure they were all closed and I could still hear that noise which I thought was really strange. The noise was just not going away and even when the engine was turned off it was still there. I ended up waiting in the car for around 20 minutes and it was completely silent – apart from this noise in my head.”

He adds:

“I was in panic, stressed, frustrated when it first started and would be ironing my shirt for work in the morning in floods of tears as it wouldn’t go away. But now I manage really well. It doesn’t impact on me as much as it did as I have learned ways to cope and manage it. Staying calm helps, as does exercise. I always tell people that it will get better, you just have to give it time.

I have listened to a few seminars during lockdown that gave me excellent tips to try. Once was about moving the tinnitus down the priority list in your head. It’s all about knowing that it’s there but trying not to make it something to worry about – because then it moves up your priority list.

RNID has invested over £1m in silencing tinnitus since 2012. The charity’s research in this area has increased understanding of the biological basis of tinnitus, knowledge that is now being used to develop treatments.

Donations have helped fund a PhD student to study how brain activity changes as tinnitus develops.  In time, this research will move us forward to find effective treatments for tinnitus. For every £1 we receive, 92p goes to help deaf people and those living with hearing loss or tinnitus.

RNID is asking for a future where tinnitus is silenced and asking supporters to donate today  https://rnid.org.uk/get-involved/donate/

·         £25 Would pay for a researcher to use a specialised microscope for one hour to study the inner ear to improve delivery of drugs to treat hearing loss.

·         £500 Would cover the cost of a brain scan for a person with dementia, helping us understand the link between hearing loss and dementia.

·         £10,000 Would support a small pilot study to carry out preliminary testing of a potential new treatment for tinnitus.

The charity also runs a Tinnitus helpline which offers free, confidential information about tinnitus. Call 0808 808 6666 (freephone) or Text 07800 000360.

BREAKING: Captain Sir Tom Moore Dies With Coronavirus

February 2, 2021

The 100 year old war veteran had been seriously ill in hospital since Sunday.

Same Difference shares the sadness of the whole UK at the loss of the fundraising legend who became a national treasure during the first UK lockdown.

We will always remember his fundraising efforts by walking frame. We thank him for bringing hope and cheer and good news to our lives in the last year of his lifetime, during a time that was otherwise so dark.

RIP Captain Sir Tom.

Tommy Pilling: Conmen Pose As Couple To Steal Fundraising Cash

February 2, 2021

CROOKS posing as a grieving widow with Downs syndrome are targeting the family’s loyal supporters in a bid to con them out of cash.

Fraudsters claiming to be Maryanne Pilling are attempting to gather collections in memory of her late husband, Tommy.

The pair made history as the UK’s first couple with Down’s syndrome to marry, but Tommy sadly lost his Covid fight on January 1.

In the wake of his death, a host of fake social media profiles have been created on Instagram and Facebook claiming to be raising cash in memory of Tommy to help support his wife.

Maryanne’s sister, Lindi Newman, 33, has slammed the individuals for taking advantage of the family during their time of need.

She said: “Someone tried to hack their Instagram and Facebook accounts and then created fake accounts and messaged followers posing as Maryanne and asking for money.

“It’s so awful – they’ve now blocked us so we can’t see what they are doing and I think it’s an attempt to cover it up.

“Lots of people have reported the fake accounts but they are so similar and I am concerned people will not know the difference.

“With Instagram the real account uses a capital M and T in their names.

“We had about 50 messages from people who were contacted by these people and they were asking us if it was true.

“They would have never asked for money like this and anything that was donated went to homeless charities or organisations.”

Tommy, 62, from Shoebury and Maryanne had celebrated their 25th wedding anniversary in July and shielded for much of 2020.

The couple boasted 70,000 followers from across the world.

Mrs Newman added: “It’s disgusting and people have seen his passing as an opportunity.

“It’s only just a month since he died and we’ve got enough to deal with without all this too.

“I just hope their followers do not stop supporting them but I do not think anyone has given any money and most people knew it was a scam. 

“Their real social media accounts were never about this but are about sharing their story.

“Maryanne is not doing too good at the moment and it’s not getting any easier for her.

“I am worried it will get worse when she goes home. We don’t know what she’s going through as everyone grieves differently.”

Last month huge numbers joined an online candle service in memory of Tommy.

The family held the service and encouraged followers around the world to join in by lighting a candle and posting images online.

Visit http://www.instagram.com/maryanneandtommy/ for any official fundraisers set up.

 

Mother Asks Victoria Derbyshire: Will I Ever See My Disabled Son Again?

February 2, 2021

As well as this interview, Victoria spoke to the parents of a severely disabled 14 year old boy in a care home who haven’t seen their son since Christmas Day. They raised the very important issue of children’s care homes, which have had no coverage at all while elderly care homes have been everywhere.

The vaccine is, of course, currently only advised for adults.

Same Difference joins countless parents in asking a very important question: What about learning disabled children? We call for them to be given priority for the vaccine, along with all shielding children, at the very earliest opportunity.

Heart-Breaking Philippa Day Call The DWP Didn’t Want People To Hear

February 2, 2021

With many thanks to Benefits And Work.

 

DWP lawyers tried to prevent a coroner from releasing a recording of a distressing telephone by Philippa Day in which she told a call handler that she ‘needed a reason to live’, but received no help whatsoever.

Philippa took her own life after she was told that she had to attend a face-to-face PIP assessment in spite of her anxiety, depression and agoraphobia and in defiance of pleas by her CPN.

In the call, a clearly very distressed, sometimes crying, Philippa tells the DWP staff member she is “literally starving and cold”, “genuinely can’t survive like this for much longer”, is “in so much debt”, “literally cannot leave the house”, and needs “a reason to live”.

However, the DWP agent simply asks her if there is anyone in her family or a local charity who can help her and tells her that she needs to talk to Capita about when she will have her assessment.

No note was made on Philippa’s file of the level of distress she was in and the DWP’s six-point plan to be used when claimants express suicidal intent was not used.

The call handler told the inquest that she had heard many claimants crying and saying similar things.

In a statement, Philippa’s family said:

“As our family made clear in evidence given at the inquest into the death of my sister, we believe that Pip’s treatment by the DWP had a direct impact on her mental state and in the end is the reason for her death.

“Support from her community psychiatric nurse and from her family kept her going. But the constant cold and unsympathetic wall of resistance that she met at Capita and the DWP was more than she could endure.

The coroner is to issue a prevention of future deaths report telling the DWP to improve mental health training, record keeping and assessment processes.

Listening to the call, however, it is hard not to conclude that the first thing the DWP needs to introduce is the tiniest scrap of humanity into its treatment of claimants.

You can listen to a copy of Philippa’s call on the Guardian website

Read more about the conclusion of the inquest on the Leigh Day website

The Samaritans can be contacted on 116 123 or by emailing jo@samaritans.org or jo@samaritans.ie.

Kellie Larkin

February 2, 2021

Kellie Larkin says lockdown has improved her quality of life.

The 20-year-old from Country Tyrone has cerebral palsy, is quadriplegic and is a permanent wheelchair user.

She is also non-verbal and uses eye-gaze technology to communicate through a computer.

With the increase of online technology during lockdown, she says it has created more opportunities for her to communicate than ever before.

Kellie is part of Barnardo’s NI Disabled Children and Young People’s Participation Project and in 2020 won the charity’s Young Achiever Award.

Covid: Powerchair Footballer’s Family Reunion Hopes After Jab

February 2, 2021

An England powerchair footballer who has been isolating in his bedroom for nearly a year hopes to be reunited with his family after being vaccinated.

Ed Common, who has muscular dystrophy, is on a Covid vulnerable list and got a call “out of the blue” by his GP.

His only direct contact has been with his mother inside the family home in Hexham, Northumberland.

“I just want to get back to normal and be able to go out and do things with my mates,” the 26-year-old said.

Before lockdown, the Newcastle United fan used to train twice a week and meet up with friends.

However, in March 2020, the family decided he should isolate within their home to keep him “as safe as possible” because he has a weakened immune system.

It meant only mum Lorna could go into his bedroom and he was unable have contact with his father Graham, sister Gemma, 27 and brother Joe, 17, who live in the same house.

He received his first dose of the Oxford-AstraZeneca vaccine on Thursday and the family will wait for his second dose and immunity to build before they begin to see more of each other.

Ed, who has represented England at the sport’s world cup and European championships, hopes to make the world cup squad for the 2022 tournament in Australia.

“I get up, usually watch TV, Netflix and stuff and play with some of my mates on the PlayStation,” he said.

“I’m looking forward to getting back to football and hopefully get on to the next England team for Australia.”

His mum said the vaccine meant there was “light at the end of the tunnel”.

“I knew that he would struggle to fight Covid off if he was to catch it,” Mrs Common said.

“We got a call out of the blue saying there was a spare vaccine and they asked if Edward would like to come down to get his and we were on our way.

“I’m over the moon that he has now had it. We still have to be very careful.”

Vaccines are currently being given to the elderly and most vulnerable first, with a list of nine high-priority groups being followed.

EastEnders Star Rose Ayling-Ellis Reveals Show Will Further Explore Frankie’s Deaf Identity

February 1, 2021

EastEnders star Rose Ayling-Ellis has revealed the show will further explore Frankie’s deaf identity.

On the BBC One soap, the actress plays Frankie Lewis, who is the deaf daughter of Mick Carter (Danny Dyer) and Katy Lewis (Simone Lahbib); the woman who sexually abused Mick while he was in a care home as a boy.

While Frankie is currently caught up in the emotional storyline, Rose recently confirmed the character’s deaf identity will be explored further in a forthcoming plot.

“For too long, TV hasn’t portrayed the deaf experience of deaf culture,” Rose told Inside Soap.

“I think for people who don’t know anyone who is deaf, it’s important to show what life is like for a deaf person.

“Even things such as using my voice and having the audience hear my ‘deaf accent’ is a big step forward. I truly hope that hearing voices such as mine on TV will become the norm. Plus, it’s exciting to have two deaf characters on a major prime-time show.

“Ben’s [Mitchell] experience with deafness is very different from Frankie’s which shows that not all deaf people are the same. Sign language is a huge part of Frankie’s life too, so hopefully you will see more of that.”

She added: “You will get to see more about Frankie’s deaf identity, which may teach the audience a thing or two that they potentially didn’t know, or hadn’t thought about before.”

 

The comments follow Linda Carter discovering more of Katy’s abuse and Shirley demanding answers over Katy’s ongoing freedom.

Quad Gods: The World-Class Gamers Who Play With Their Mouths

February 1, 2021

Chris Scott was falling towards the ground above Long Island, New York, when he realised that something was wrong.

An experienced skydiving instructor with around 6,000 jumps behind him, this should have just been another day at work. Strapped to Scott’s chest was a tandem jumper named Gary Messina, for whom the jump was an annual birthday tradition.

But when the men reached an altitude of 175ft, the parachute that had been slowing their descent suddenly collapsed. It had most likely been caught by a dust devil, a small unpredictable tornado that is the bane of skydivers, as it forms in the same clear conditions that are perfect for their sport.

Messina, a prison officer who was due to turn 26 the next day, died on impact with the ground. Remarkably, Scott survived, although he soon blacked out. “I remember staring at the ground – and that was it,” he later told reporters. He was airlifted to Stony Brook University Hospital.

When he woke up 11 days later it was early August 2014 and doctors told him he had broken his neck. He was paralysed from the shoulders down and lucky to be alive. “I was a light beam away from death,” he said.

Scott went to a specialist rehabilitation centre in Atlanta, Georgia, before moving back to New York to live in the same apartment building as his family. He used a mouth-operated joystick to move his wheelchair and regularly went to Mount Sinai Hospital in East Harlem to work on his rehabilitation.

It was there that he met Dr David Putrino in March 2019. In his role as the director of rehabilitation innovation at Mount Sinai, Putrino explored different ways of improving patient health. He used training methods associated with high-performance athletes, as well as technological solutions like virtual reality.

The pair met at a time when Scott was struggling to cope. He missed being part of a team and felt a lack of purpose in his day-to-day life. Putrino had been recommended as someone who might be able to help.

“We sat there staring at each other in silence for a little while,” says Putrino. “And then I was like: ‘Well, what do you like to do?'”

Scott replied that he loved playing video games against others. Putrino was surprised. “That was me being naive at that point,” he says, “because I’d never seen competitive gaming from someone as severely paralysed as Chris.”

They loaded a basketball game called NBA 2K into a PlayStation 4 at the hospital. Scott’s backpack hung from his wheelchair and he asked Putrino to reach inside and fetch a device for him.

The device had a mouthpiece with a joystick and different sensors that could be sucked on or blown into. This was Scott’s QuadStick and it helped him to play video games using his mouth.

Putrino mounted the QuadStick on to the wheelchair so that it lined up with Scott’s mouth. Then they began to play.

Scott moved the joystick with his lips. He could control the basketball players, making them pirouette, leap and throw, by puffing and sipping on the holes. “It was just incredibly dextrous and skilled,” says Putrino. “And all of a sudden he was kicking my ass at NBA 2K.”

The experience gave them an idea. They were both familiar with the growing industry of esports where gamers competed against each other in tournaments. What if they could use Scott’s video game skill and Putrino’s expertise in high-performance training as the basis for an esports team with other quadriplegic players?

Scott sent out a message to other patients at Mount Sinai to gauge interest. “This was the big test, because we weren’t sure whether anyone would reply,” says Putrino. But they didn’t have to wait long to hear back. “People contacted us immediately and they were saying: ‘We want a piece of this.'”

Blake Hunt was one of those who got in touch. He had played video games since he was a child. “I remember playing Nintendo with my brothers,” he says. Whoever came in first place had bragging rights for the day.

A talented American football player, Hunt was 17 when he broke his neck during a match for his high-school team. “I couldn’t really figure out a way to be competitive once I got hurt,” he says. “That’s where I got a lot of my enjoyment in life from. So I struggled with my identity for a while.”

After the accident Hunt couldn’t move his legs, but he was able to move his arms and wrists. Without full use of his hands, however, he couldn’t find a way to play the video games he’d always enjoyed.

“One day I got really angry, and I decided to game by any means possible,” says Hunt. Although he couldn’t move each finger individually, he could make his hand close by pulling back his wrist. By flexing his wrist back and forth, he discovered he could press the buttons and move the joystick of a specially-designed controller.

The first game he played was Call of Duty: Black Ops – a shooting game with a zombie mode that Hunt particularly enjoyed. Then he began playing American football on Madden NFL. It was a revelation. “That’s when I realised that I can still be as competitive as anybody,” he says.

Shortly after their call-out, Scott and Putrino held a meeting where they set out their vision for an esports team that could compete at the highest level. Hunt was one of those in attendance. Soon a group of eight people with paraplegia and quadriplegia were meeting up regularly to practice. “And from there it kind of skyrocketed,” says Hunt.

One of the first video games they played together online was League of Legends, a gladiatorial game where two teams battle each other in a fantasy setting. It is a game that relies on teamwork and, as they played, the different playing styles and characteristics of each team member came to the fore.

Sergio Acevedo was a laid-back, calming personality, while Richard Jacobs was lively, animated and often spoke in the third person as he played: “Good job, Rich!” Hunt could sometimes be heard singing at points of particular tension. Some of the team played by pressing pads with the side of their heads, while others manipulated controllers with their arms. People wouldn’t think that the person on the other side of the avatar is beating them by playing with their mouth.

They found that playing together they were a formidable outfit. “Individually we had a hard time winning sometimes,” says Hunt. “But when we all came together, it was very hard to beat us.”

Nyree Stevens was another who responded to the initial call-out. Thirty years old and a keen artist, she uses her mouth to paint portraits of her friends. She was injured by a stray bullet on a night out with friends in Harlem when she was 18. “It was a gunshot wound to the neck,” she says. “I was in the wrong place at the wrong time.”

Video games have become an important part of her life. “It helps me get my independence back to be able to play,” she says. When she joined the team, she was the only woman. “You know what boys are like with their games,” she says. “They live for gaming. But I’m getting up there with them.”

Often the people that they played online – and beat – were non-disabled. Sometimes their opponents didn’t know who they were playing. “People don’t know,” says Hunt. “And it’s very liberating to beat them. That’s part of the fun.”

But with the growth in popularity of streaming platforms like Twitch, often gamers can see each other. Nyree Stevens enjoys it when her opponents can see her.

“A lot of people wouldn’t think that the person on the other side of the avatar is beating them by playing with their mouth,” she says. “So that’s totally cool.”

Practice paid off. By the summer of 2019, the team were ready to begin playing in competitions where prize money and greater prestige would be up for grabs. On the cusp of their first tournament in late July 2019, they held another team meeting.

Afterwards, Putrino remembers being with Scott as he left Mount Sinai for the day. “He stopped his chair and looked over his shoulder to ask me: ‘Do you really think we can do this? Can we really pull this off?'” Putrino told him that to get as far as they had they were already winning. Scott smiled and rode his chair out of the hospital.

A few days later, there was terrible news. Scott had died from a chest infection. “It was a shock to all of us,” says Hunt. “It’s still hard to deal with. We don’t really discuss it too much.”

“That was a big blow,” says Putrino. But he adds that for many disabled people, health is fragile. “You just never know what’s going to happen.”

The team got together and resolved to continue what Scott had started. Their team name would be the Quad Gods. “We call ourselves the Quad Gods because in our minds we’re all gods of our own lifestyle,” says Hunt.

They each came up with different alter egos. Hunt chose Shango. “He’s an African God of thunder, and when I bring the pain, I bring the thunder.” Richard Jacobs chose Zeus. Nyree Stevens chose SittinPrettii.

In the first competitive tournament they played in there were 99 teams, and the Quad Gods were hoping to finish in the top half. They came fourth. They began playing in – and winning – more tournaments online, finding particular success with the popular fighting game Fortnite.

As stories about their team spread among the gaming community, funding opportunities came their way. They received money to buy equipment and to launch as a legitimate esports team. The New Jersey Nets basketball team donated a gaming space. The Quad Gods began looking around for a full-time coach.

Their next goal is to place highly at a range of different esports World Championships next year. The Olympic Committee are strongly considering esports for the 2024 Olympics and, by securing a world ranking, the Quad Gods hope to qualify.

For the team, the benefits of competitive gaming have been considerable. “When we do things we enjoy, it releases stress,” says Hunt. “Stress is a killer in its own right. In that way gaming has been therapeutic. I’ve been in the chair since I was 17. I’m now 31. In many ways gaming has saved my life.”

“None of us would be together if it weren’t for Chris showing up to my lab one day and saying ‘Hey, I got to do something,'” says Putrino, known affectionately as “the Quadfather” by the team.

The Quad Gods logo was painted by the laid-back Sergio Acevedo, who, like Nyree Stevens, paints with his mouth. It is of a wheelchair being held aloft by wings.

“Chris will always be our captain,” says Hunt. “He’s our guardian angel and the wings embody that.”

For more stories about video games and disability, listen to Unplayable: Disability and the Gaming Revolution

The Story Behind The Inauguration’s Sign Language Pledge Of Allegiance

February 1, 2021

Fire Captain Andrea Hall of South Fulton, Georgia, explained that her late father was deaf. She is bilingual – an English speaker and an American Sign Language user – and she said she wanted people watching her to be able to experience the US Pledge of Allegiance in their own language.

Can You Date Someone With Cerebral Palsy?

January 29, 2021

That’s a loud and clear and signed and communicated YES from us!!

Unplayable: Disability And The Gaming Revolution

January 29, 2021

There has long been a sizeable gap between the popularity of video games and their accessibility. Disabled gamers can find themselves thwarted by changes to controller settings, frozen out of storylines because particular motor skills are being tested, or stymied by sudden obstacles that require acute hearing or eyesight from someone who has hearing or sight loss. But after decades of advocacy work by disabled gamers, that gap is beginning to close.

In this documentary, blind gamer Steve Saylor hears some of the stories behind how gaming became more accessible. The documentary includes contributions from Steve Spohn from Able Gamers on how a bag of rice proved instrumental in getting an innovative controller made and from Mike ‘BrolyLegs’ Begum, who uses his face to press the buttons and has become a top Street Fighter player.

Steve Saylor always thought that he sucked at gaming – it turned out that gaming sucked for him.

Financial Stress Caused By DWP And Capita Failings Main Factor In Death Of Philippa Day, Coroner Rules

January 28, 2021

With many thanks to Benefits And Work.

 

A coroner ruled yesterday that a catalogue of 28 failings by DWP and Capita and the financial stress that resulted were the ‘predominant factor’ in the death of Philippa Day.

As reported elsewhere on Benefits and Work, Philippa took her own life after her DLA was wrongly stopped and she was required to attend a PIP face-to-face assessment, in spite of experiencing mental health issues including unstable personality disorder (EUPD), anxiety, depression and agoraphobia.

Nottingham Coroner’s Court heard that some of the errors were made repeatedly and were not just mistakes by individuals.

Mistakes included losing Philippa’s PIP claim form, failing to follow their own procedures when dealing with a vulnerable claimant, failing to record phone calls and wrongly attributing evidence given by a CPN as evidence from the claimant herself.

Philippa’s sister made a statement after the interview about the death of her sister, known to the family as Pip.

“As our family made clear in evidence given at the inquest into the death of my sister, we believe that Pip’s treatment by the DWP had a direct impact on her mental state and in the end is the reason for her death.

“She was in despair because of the depths to which she had sunk, she could see no way out of the debt and the poverty in which she was living. Pip’s poor mental health meant she was not able to handle the battle with the DWP for the reinstatement of her benefits. The stress of the conflict with the DWP made her even more ill.”

The coroner is to issue a prevention of future deaths report which will instruct the DWP to provide mental health training for staff, improve both record keeping and the assessment process as well as ensuring that letters from the DWP do not cause further stress.

You can read the full story on the Independent website.

Katie Price’s ‘Candid’ BBC Documentary Harvey And Me Praised

January 28, 2021

A BBC documentary following reality TV star Katie Price and her disabled son Harvey has been positively received after airing on Monday.

Katie Price: Harvey and Me charts the difficulties the pair face as he enters adulthood – including crucial decisions over long-term care.

Price previously told the BBC the decision to move Harvey to a specialist college was “terrifying”.

In its five-star review, The Times said the documentary showed “hidden depths”.

The paper’s TV critic Carol Midgley said it portrayed the “ferocity of maternal love” and presented Price in a “new, more meaningful light”.

In contrast to her public persona as a former glamour model, she was “just a mother fighting for a son whose special needs are so complex”, Midgley wrote.

Sense, a charity which supports families dealing with complex disabilities, said it had been contacted by “many” parents in a similar position since the broadcast.

The charity’s chief executive Richard Kramer said: “The programme was incredible because as well as highlighting the issues that parents of children with complex disabilities face, it also showed its joyous and rewarding moments.

“Harvey is a star, and the incredible bond between him and Katie is clear”.https://emp.bbc.co.uk/emp/SMPj/2.39.12/iframe.htmlmedia captionKatie Price and her son Harvey in a crucial year of his life

Harvey, born in 2002, was diagnosed with Septo-optic dysplasia, a rare genetic disorder affecting his eyesight, as well as autism and Prader-Willi syndrome, which can cause learning difficulties and behavioural problems. He is unable to control his weight and requires 24-hour care.

The realities of life both living with and managing someone with these conditions were well explored, said The Guardian’s Lucy Mangan.

“There is damaged plasterwork all over their home, and Harvey’s younger siblings know to run upstairs if he kicks off,'” she said.

However, her three-star review did find fault in its scope. She said the “candid” documentary, made by long-time friend of the family Hannah Lowes, had “the inescapable feel of a pre-emptive strike against media criticism Price is likely to face for ‘sending her child away'”.

And while Mangan praised the delicate depiction of the bond between mother and son, she suggested Price “might have used her platform to spell out in greater detail” the challenges faced by parents of disabled children – particularly those without her resources, despite her recent bankruptcy.

The Independent’s three-star review, by Ed Cumming, also noted the programme didn’t “expand much beyond its immediate subjects, or push the boat out compositionally”.

‘Price’s celebrity was irrelevant’

But the consensus was that despite these shortcomings, the documentary effectively explored the hidden realities of life as a parent of a disabled child.

Viewers witnessed Harvey’s “polite and affectionate” personality, said The Telegraph’s Anita Singh, and understood that Price “wanted to protect her son, but knew that sending him to a place where he could learn independence and crucial life skills would be the best thing she could do for him”.

Singh’s four-star review concluded: “Price’s celebrity was irrelevant to the programme. She was not here as a famous person, but as a parent whose dilemma will be familiar to many.”

The documentary was watched by around 2.4 million people on BBC One, according to overnight ratings. Price thanked viewers for their support and said she wanted to “continue the conversation” around “the difficulties that parents of children with complex needs face”.

Former EastEnders actress Danniella Westbrook commended Harvey as a “amazing young man”, adding: “What a great mother Katie is.”

Other users shared their admiration for Price as a parent and defended Harvey against previous online abuse he has received.

Katie Price: Harvey and Me is available to stream on BBC iPlayer (UK only).

Nine Month PIP Extension Letters Flood Out

January 27, 2021

With many thanks to Benefits And Work.

 

Benefits and Work is hearing from numerous members who have received a letter from the DWP telling them that their PIP award has been extended, usually by nine months.

The letter reads:

‘We suspended Personal Independence Payment (PIP) Award Reviews because of the coronavirus (COVID-19) outbreak.

We have now begun reviewing PIP awards again and we may look at some awards later than we originally planned. To make sure that you still receive your payments we have extended your award until . . .”

The letter then gives a new end date for the award, typically 9 months after it was originally due to end.

The letter goes on to say that the claimant does not need to contact the DWP and that the DWP will contact them before the new end date, to review their award.

We have heard from members whose award was due to end as far off as 2029 but who have now been told it has been extended into 2030.

The letters appear to be the ones that Justin Tomlinson referred to earlier this month, when he admitted that over half of the 1.6 million claimants who are having their PIP awards extended had still not been informed.

DWP And Capita Both Fail To Provide Crucial Recordings In Claimant Death Case

January 27, 2021

With many thanks to Benefits And Work.

 

Both the DWP and Capita failed to record, or destroyed, vital evidence relating to the death of Philippa Day, the Disability News Service (DNS) has revealed.

Last week we shared details of the incompetence and institutional callousness that lay at the heart of the death of Philippa after she was told that she had to attend a face-to-face PIP assessment in spite of her anxiety, depression and agoraphobia and in defiance of pleas by her CPN.

Now DNS has published further details from the ongoing inquest which may lead some readers to question whether it was solely incompetence which resulted in vital recordings of telephone conversations not being made available to the coroner.

A Capita representative, Edward Cronie, was asked why recordings of calls made to Capita by Philippa’s CPN on 7 August – the day before Philippa was found unconscious at her home – and 9 August were not available.

According to Cronie the telephone extension of the agent who took the call on 7 August was not “correctly configured to record calls”, while there had been a “congestion issue” two days later, which meant eight calls to another agent’s extension had not been recorded.

Cronie suggested – in response to a question from the coroner – that someone at supervisory level would have been able to access recordings and delete them from the system, although there was no evidence that they had.

Asked if the system showed if recordings had been deleted, he said: “I would not be able to answer that.”

Meanwhile, the DWP told the coroner that they were unable to provide a recording of a key conversation between the DWP and a CPN because they had deleted it.

The DWP claimed they had done this because data protection rules meant they had to delete recordings that were “no longer relevant” after 14 months.

They said that they had not been aware of the inquest until July 2020 – nine months after Philippa died – and by then the call had been deleted.

However, where a claimant has died in circumstances that may implicate the DWP, and where the DWP have carried out their own investigation into the matter, it is absolutely clear that all the data relating to the case should be kept.

It might be needed not just for an inquest, but also because the next-of-kin might wish to bring a claim against the DWP, given that a young child lost her mother in this instance.

Which perhaps explains the alacrity with which vital evidence was destroyed.

You can read more about Capita’s failure to provide recordings here and the DWP’s decision to destroy evidence here.

‘People Assume I Can’t Be Gay Because I’m Disabled’

January 26, 2021

On a video on Tik Tok, Stephen Thomas Smith looks into the camera and shouts: “I am a gaaaaaaaaaaaay!”

It’s his reaction to people who assume that he must be straight or doesn’t have any sexual feelings simply because he’s disabled.

Stephen, who has cerebral palsy, is a disability and gay rights campaigner and uses Tik Tok as a way to raise awareness on the issues.

But he admits sometimes he doesn’t feel like he’s part of the LGBT community because he often comes up against “ableism” – discrimination against people with disabilities.

“When I go to G-A-Y or Pride I get denied access to nightclubs because I’m ‘too drunk’ – when actually I’m sober – and I get told I’m on drugs,” says Stephen.

“That’s my community and it’s supposed to be accepting but yet I go to that ‘safe space’ and get denied access.

“So why would I associate myself with a community that’s so ableist. I’m not particularly proud to be part of that community as a disabled person.”

Stephen, 24, says the ableism he experiences means he often doesn’t feel like he “has an identity” within the LGBT space.

“You feel like you’re in the middle ground or this place of nowhere because I’m disabled, so I’m supposed to be with disabled people.

“But I’m also gay but they don’t accept me. It feels like I’m in the middle and I have no identity. It’s weird.”

When Stephen he told his family he was gay, he says it wasn’t really a big thing as he has two older sisters who are lesbians.

But it was more of a surprise to people at his secondary school because he was just seen as the “person in the wheelchair”.

“It was easy to come out but I think people didn’t expect it,” says Stephen. “But my mum expected it because I’m as camp as Christmas.

“I don’t think people usually think, ‘Oh this disabled person is gay or straight or they want to interact or they have desires’.

“In high school I was just seen as the disabled kid.”

Stephen, who is from Manchester but lives in London, says even now when he goes on dates he experiences ableism which can feel “dehumanising”.

“I went on a date once and I met him for a coffee and he just sat down with me and he said, ‘This is like the show the Undateables’,” he says.

“I was like, ‘Cool, the first think you see is my disability, not my outfit’. So what I did was just walk out because I’ve not no time for ableism.”

Stephen believes people often see those with a disability as being asexual because of the way disability is portrayed in the media.

“We’re portrayed to be helpless creatures who depend on people and we’re created to be animated,” he says.

“And we don’t fit into a certain gender – to be a man is to be strong, is to walk and talk in a certain way, and to be a woman is the same but as a woman.

“Because disabled people can’t abide to that etiquette of the body, we’re seen to be asexual, dependant creatures.

“We still have desires and we have our own minds. People need to stop looking at the physical and start really looking at people.”

Stephen has been using Tik Tok for less than a year but already has 48,000 followers and 1.2 million likes.

In his videos, he uses sarcasm and humour to raise awareness and address some of the misconceptions he experiences as a disabled gay person.

“Laughter is a gateway and instead of people laughing at me, they’re laughing with me and I think that’s important,” Stephen says.

“It allows people to understand more about your disability and instead of being turned off, it’s more of a gateway for people to access it.

“I still get a load of hate comments but I reply to those in a funny way. Someone called me spaghetti hands so I made a funny video about having spaghetti hands.

“It doesn’t really affect me because I’m living my best life over here.”https://emp.bbc.co.uk/emp/SMPj/2.39.11/iframe.htmlmedia caption”I reply to hate comments in a funny way”

Stephen says even though he gets some hateful comments, he also has lots of positive ones too.

“I get loads of messages every month saying either their son’s got cerebral palsy and I’ve helped them understand it or I made someone laugh.

“I think the videos break a stigma because it allows people to have an insight into disability and queer disability and the queer body.

“I think the people who are hateful just need more education or more visibility.”

Stephen’s cerebral palsy means he has a carer and uses a wheelchair if he’s travelling long distances – for example through an airport.

But he doesn’t feel like he is limited by his disability and has just been accepted to study a MA in photography at the Royal College of Art in London.

Stephen believes better representation of disabled people in the media would help combat ableism and discrimination in society.

He believes the show The Undateables – which follows disabled people on dates – is “patronising” and “toxic” for disability representation.

“I’d like to see more disabled people in mainstream media and more visibility, Stephen says. “I’d like to see some bad-ass disabled people doing some amazing things.”

Autistic Sunderland Teen Illustrates Charity Aviation Book

January 26, 2021

A teenage aviation enthusiast with autism has illustrated a book in aid of military charities after using art as an emotional outlet during the coronavirus pandemic.

Jack Berry, from Sunderland, who is also selectively mute, began drawing planes last summer.

Flying High in the Sunlit Silence depicts aircraft including Lancaster bombers, Spitfires and Tornados.

Red Arrows squadron leader Adam Collins described his work as “inspirational”.

Details explaining the history of each plane and helicopter, written by pilots and military experts, accompany Jack’s illustrations.

Formula 1 driver Lando Norris, Red Bull designer Adrian Newey and ex-Formula 1 driver David Coulthard, who is now a commentator for the sport, have also contributed to the book.

Jack’s mum, Sara Berry, said he had been inspired by the lockdown efforts of Captain Tom Moore, who last year raised millions of pounds for the NHS.

With an initial interest in planes stemming from his grandfather’s work on Concorde, Jack’s fascination was cemented by trips to airshows and the Battle of Britain Flight Memorial Visitor Centre in Lincoln.

“He wants to know everything about aircraft and he’s so engaged with it so he wants to show his appreciation to the pilots,” Ms Berry said.

“He’s always drawn and will do it either to calm himself down or as a way of saying ‘thank you’ to someone.

“The RAF and the services have opened their arms and accepted Jack for who he is. I think that’s really important.

“The pandemic has been draining for me as a parent and for Jack, but this has given us a chance to bond.”

Squadron leader Collins said Jack’s illustrations “capture the themes” of the Red Arrows’ recent 100th anniversary – commemorate, celebrate and inspire.

Three charities chosen by the youngster – SSAFA’s Forces Additional Needs and Disability Forum, International Bomber Command Centre and Lincolnshire’s Lancaster Association – will receive a percentage of sales.

An e-book will be available from Monday to tie in with Jack’s 14th birthday, with a print version set to be available shortly afterwards.

Penguin Bloom

January 26, 2021

Director Glendyn Ivin’s melodrama Penguin Bloom comprises two key plot strands – one involving a human and the other an animal – which have unsubtle intersecting metaphors.

While vacationing in Thailand, Sam Bloom (Naomi Watts) falls off a ledge and becomes a paraplegic. Months after the accident, while she is in the throes of deep depression, her husband Cameron (Andrew Lincoln) and their three young boys (Griffin Murray-Johnston, Felix Cameron and Abe Clifford-Barr) bring into the family home an injured magpie they name Penguin, pledging to nurse it back to health. And so: a bird learning to fly again coupled with the story of a wheelchair user whose spirits are broken.Penguin Bloom: how a scruffy magpie saved a familyRead more

Insulating Penguin Bloom a little from complaints that it trades in heavy-handed metaphors is the fact it was based on a true story (adapted from a book by Cameron Bloom and Bradley Trevor Greive). It reminded me of Craig Monahan’s gentle 2014 drama Healing, which was inspired by a real-life initiative that had prisoners working in a sanctuary for injured raptors – thus ripe with symbolism invoking broken wings and broken people.https://www.youtube-nocookie.com/embed/q7eZEZHRrVg?wmode=opaque&feature=oembed

The idea of an animal’s physical and behavioural transformation mirroring a person’s is an interesting and multifaceted concept. Are we for instance projecting ourselves on to animals when we see our stories in them, or are some narrative templates – such as triumphing over adversity – so strong they transcend species, bringing a degree of narrative order to a chaotic universe?

It becomes painfully clear early in Penguin Bloom, however, that Ivin – who recently directed two exceptional TV series, The Cry and Safe Harbour – is going to take the easy way out. Even talented directors find it difficult to resist the lure of the voiceover, despite that famous dictum being drilled into their heads since film school: the one about how they ought to “show, don’t tell”.

The person doing the telling in Penguin Bloom is Noah (Murray-Johnston), one of Sam and Cameron’s sons, who begins by reminiscing that “Mum loves the ocean, she always has” and eventually concludes that she “is not the person she once was … but for me, she’s more than that”. How was anybody not wincing when that line was recorded?

I quickly found myself longing for less yakety-yak and more visual storytelling – only for another dictum, “careful what you wish for,” to start ringing in my head. In one dramatic scene Sam stares at a jar of honey and pushes it off the kitchen bench, as if to say: my life has been smashed to pieces – a moment so symbolically loaded they put it on the trailer. During another Sam smashes framed family photos with a broomstick, and yes – they put that one on the trailer too.Penguin Bloom review – Naomi Watts saved by a magpie in charming dramaRead more

Meanwhile, Penguin stays busy charming the characters and the audience, softening Sam’s hardened heart and embedding herself into the family’s routines – pottering around the home, stealing a teabag from a mug and generally behaving like a loveable little scamp. The way the bird (several were used during production) is integrated into various scenes – as if it really were a member of the family – is exceptionally well done: props to magpie trainer Paul Mander, who was assisted with modestly used and seamlessly integrated CGI.

When Penguin finds herself in a traumatic situation, I discovered myself more emotionally involved than I thought, genuinely concerned for her safety – well aware that Australian cinema has a reputation for killing off animals (particularly dogs: Mad Max 2, Red Dog, Snowtown, I’m looking at you). I felt more invested in Sam’s journey in the second half too, when she takes up kayaking and Watts’ strong, solemn performance is afforded more space to breathe.Advertisementhttps://58a48e8019f0b8e3b1facee3a6b54667.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

But every once in a while Ivin did something to make me question his motives. Take for example a shot late in the piece, in which Sam looks ahead and imagines herself – smiling, upright and walking happily – beaming back at her. This image comes dangerously close to endorsing outdated and offensive views of disability: particularly the idea that a person isn’t “complete” unless they look and move like the majority.

By this point shouldn’t the film be more interested in the person Sam has become, rather than who she once was? A postscript informs us that Bloom went on to achieve numerous sporting distinctions, as if this were nothing more than a small thing to bung on at the end. It is a final confirmation that Penguin Bloom, while heartening, is more about loss than rebirth. There is a great, moving story to tell about the real Sam Bloom – but this film only gets part of the way there.

• Penguin Bloom is in Australian cinemas now

Katie Price: Harvey And Me

January 25, 2021

When faced with having to move their disabled child to a different school or college, families face difficult decisions. Now, reality TV star and ex-model, Katie Price, is on that journey with her eldest son, Harvey, who is about to make that transition.

It was a quiet 18th birthday for Harvey. There were balloons in the garden and presents were opened, including a frog lunchbox and an iPad. For a treat, Katie took him to one of his favourite places – the local train station.

“This is the best train ever. I love it,” Harvey says, taking photographs.

His birthday marks another milestone. It is time to leave school and find a college, a process the family has filmed for BBC One documentary, Katie Price: Harvey and Me.

“It’s pretty predictable to know what will happen with the other kids,” Katie says, who has four other children. “But with Harvey it’s not predictable because he’s got complex needs.”

She says searching for a specialist college has been a “new journey” for her. “It’s not easy and it’s terrifying.”

Harvey was born in 2002. He was diagnosed with Septic Optic Dysplasia, a rare genetic disorder affecting his eyesight, as well as autism and Prader-Willi syndrome which can cause learning difficulties and behavioural problems.

He is unable to control his weight and requires 24-hour care.

“It’s not straightforward, where you can just choose a college,” Katie says. “They have to have the right nursing team and know how to deal with his challenging behaviour.”

In the UK, children with long-term health conditions are cared for by child health and social care services until they turn 18 and transfer to adult services. https://emp.bbc.co.uk/emp/SMPj/2.36.7/iframe.htmlmedia captionKatie Price and her son Harvey in a crucial year of his life

It can be a precarious moment and often involves a lot of upheaval including meeting new teams and specialists.

Like many families, the Prices have been warned the most suitable college may be a long way from their Essex home, because there are few of them and they are widely dispersed.

For Harvey, the most appropriate include those in Camden, Wales, Sunderland and Somerset.

The distance, and Harvey’s age, means he will become a full-time residential student, including weekends.

To make sure they find the perfect home, Katie and Harvey have visited as many as possible. A process made difficult by Covid-19 and Katie having broken the bones in both her heels in a water park accident.

‘Crisis point’

“He needs to have his independence and I think he’ll enjoy it – make friends,” Katie says. “I want him to be in a room with his mates while he plays the keyboard and sings his songs.”

At Harvey’s current school he is a weekly boarder. Making the decision for him to board was difficult and prompted by the distress he felt at the daily travel from home to school, and the impact on the family.

“I was at crisis point,” Katie says. “It was affecting the other kids, it was the danger-zone for him, smashing the house up.

“I hated him going to residential. I cried. But I saw he was happy there.”

As the documentary reveals, there are holes in the walls of the Price house where Harvey has punched them.

His autism can lead to meltdowns when he becomes overwhelmed or distressed by a situation. For Harvey, loud noises like slamming doors can trigger this and lead him to hit his head or punch a wall – common coping mechanisms.

It is a situation Katie had to consider when they looked at colleges – would Harvey be safe? Could the staff handle him?

During a visit to The Orpheus Centre, a college in Surrey which provides therapy to disabled young adults through the performing arts, a loud and unexpected noise distressed Harvey and he threw his head repeatedly against a door.

Katie told him to count to 10 to control the stress but another noise sounded and he kicked out. The staff encouraged him outside where it was quieter, but it signalled the end of the visit.

Katie will often touch Harvey or speak with him to maintain his calmness. The duo banter constantly and have scripted phrases they say to each other – when Harvey says “Hip, hip,” Katie replies, “Hooray”.

The scripting is sometimes considered similar to stimming (self-stimulatory behaviours) that many autistic people like to use to relieve anxiety or show happiness.

When they visited National Star college in Cheltenham, Harvey was distressed and worried he would have to stay overnight.

He didn’t want to get out of the car and whimpered. Again, Katie reassured him and encouraged him to wear his ear defenders. Because this isn’t a regular day for Harvey, the teacher, Alice, showed him a “social story” with pictures of what he could expect from the hours ahead.

She decided to begin at the end with “goodbye” – so Harvey knew he would go home.

It was a difficult start, but when he visited the flats the students live in – with their own bathrooms and kitchens – and got to watch frogs and trains on a big screen in a sensory room, he was won over.

He described the college as “wicked” and excitedly said “yes mum” when asked if he would be happy there.

Katie says: “The reason I want him to go full-time residential is because some weekends they might have disco nights or bowling and he might want to go and do that and not just come home to me. It gives him a choice.”

But it is far from a done deal. It relies on much administration and the local authority agreeing to finance it.

Lynette Barrett, chief operations officer at the college, tells Katie: “We would put in a funding application to your local authority and that application would detail everything that we are going to provide for Harvey.

“For someone that is a part-time day student that may be £15,000 to £20,000 a year. For a student that is full time, all-year round residential with really high health care needs, that could be up to £300,000 to £350,000 a year.”

It will be the Price’s local authority which makes the decision on whether to fund it or it may decide somewhere local is suitable.

The approval depends on Harvey’s needs. Katie must ensure his Education Health and Care Plan (ECHP) – a legally binding document in England detailing the support he must receive – is up to date.

“Everything about Harvey is in that plan,” she says. “It’s so time-consuming and you feel like you’re alone, but you’ve just got to get on with it.”

Katie must detail Harvey’s education attainments, health problems and the medication he requires, as well as the tasks he can complete – whether he can cook for himself, dress, make the bed and wash.

The thought of Harvey leaving home is daunting for Katie, but a move she wants to pursue.

“As much as you smother your kids and you want them with you all the time, sometimes you have to let them go, just give them that bit of space to go and explore.”

This year has been challenging for the family. Harvey is classed as extremely clinically vulnerable and has been shielding during the pandemic. He also spent some time in intensive care and his health is a constant concern.

“With Harvey the future is unpredictable, but I’ll make sure that he’s in a place where he thrives on happiness, excitement, joy and he looks forward to waking up.”

Katie and Harvey have applied to National Star. They will find out in March if they have been successful.

UK viewers can watch Katie Price: Harvey and Me on Monday 25 January at at 20.30 GMT on BBC One and BBC iPlayer.

People On Carer’s Allowance Have #VaccinePriority

January 25, 2021

Learning Disability Vaccine Plea: ‘Don’t Leave Us To Rot’

January 25, 2021

As high risk groups continue to be immunised there are growing concerns that people with learning disabilities have been missed out.

Despite a recent Public Health England report warning they are six times more likely to die from coronavirus, as a group, they have not been prioritised for a vaccine.

Legal action is being taken against the Department of Health and Social Care, which says it is working hard to vaccinate all those at risk.

Nikki Fox reports.

Northern Ireland Looks To Dump Capita

January 22, 2021

With many thanks to Benefits And Work.

 

Northern Ireland is looking at the possibility of bringing PIP assessments in-house instead of outsourcing them to Capita, as is currently the case. However, Capita still looks likely to get a two year extension on its current contract.

In the second independent review of the PIP assessment process, completed in December 2020, it was recommended that PIP assessment be brought in-house.

The current contract with Capita is due to end in July of this year.

However, Deirdre Hargey Minister for Communities, said that the changes could not be made in a matter of months.

“We cannot change it right away; we cannot change something like that in a matter of months. However, I am instructing officials to look at what we need to do in the time ahead. We are looking at that in-house model, as, importantly, it meets the needs of those who require it. Engagement with those individuals, and with the advice sector, in the design and in what that will look like will be critical in the time ahead. There is a commitment from me to look at all of it and to do that.”

Scotland has already announced that it is to do away with the use of private sector companies to carry out PIP assessments.

If Northern Ireland follows suit, the pressure on the Westminster government to do the same may become too great to resist.

The Cartoonists Making Mental Health Their Muse

January 21, 2021

Comics are not just about superheroes. Emily Oomen meets the artists shaping graphic medicine – a genre focused on the experience of living with illness.

Ellen Forney was in her twenties and working as a professional cartoonist when she stumbled into the world of graphic medicine.

The artist had been working for one of Seattle’s long-running newspapers The Stranger when, in 1998 and just before she turned 30, she was diagnosed with bipolar disorder.

She says the diagnosis “sank in like the sun had gone behind the clouds”.

Comics had always been a familiar language and format for Forney. She turned to them looking for comfort and was excited to discover a new genre she had never heard of – graphic medicine.

The genre focuses on and discusses topics within the medical field from cancer to Alzheimer’s and anorexia in an engaging and entertaining way.

Although developed for patients and medical professionals as a way to explore different conditions, it is now often found in general stores and libraries.

Forney who was comfortable telling stories through this medium, started to create comics for herself about her experience of living with mental illness.

“I wrote a lot in my journals,” she says. “I didn’t know that those were going to be pieces of a comic, a memoir later, but it’s kind of how it comes out of me, in words and pictures.”

She says it gave her great solace while she learned to manage the condition.

After several years of creating comics for herself she designed a graphic memoir of the experience – Marbles: Mania, Depression, Michelangelo, and Me.

“I felt like I needed to do it for myself and to get it out there to reach other people – because I can, because I’m a storyteller, and I thought it was an important story to tell.

“It’s not just ‘here’s my experience, that was a mess’, but how do we put those pieces together? How do we come to heal?”

One story in Marbles, illustrated in black and white, tells the moment where Forney noticed her mood had lifted after she had starting taking a new antidepressant.

Standing in the shower she realised the water droplets looked like lanterns at a night festival and said the joy she felt at seeing images-within-images made her feel that things were looking up.

Making the memoir, “was a very, very thorough excavation of my experience,” Forney says. “I felt like I came to understand [my bipolar disorder] and wrap my head around it better.

“An important part of what we have as a storyteller is…we can offer, if not solutions, at least the possibility of hope.”

The memoir, published in 2012 is now considered part of the graphic medicine canon.

Forney, who has taught the art of comics at the Cornish College of the Arts since 2002, has also created artwork for Seattle’s Capitol Hill light rail station and collaborated on the award-winning illustrated novel, The Absolutely True Diary of a Part-Time Indian.

But graphic medicine remains an important part of her life. She recently published her latest book, Rock Steady: Brilliant Advice From My Bipolar Life which is a self-help survival guide full of tips, tricks, and tools that can help those living with bipolar disorder thrive.

“One of the things that’s really, really important, is a sense of humour,” Forney says. “It’s one of the ways to give yourself some sort of perspective when you’re telling a story.”

British cartoonist Gemma Correll agrees. “It can be good to laugh at yourself sometimes, especially when you feel really bad.”

She says graphic medicine has helped her convey her experience of anxiety and depression and she incorporates humour in a way that is relatable to many people.

In her comic version of Sleeping Beauty, while she depicts two fairies giving baby Aurora nice presents, the third gives her the gift of a lifetime of clinical depression.

As the saying goes, laughter can be the best medicine.

Correll, who has been featured by the BBC, The New York Times and Mindful Magazine, says: “One of the hardest things I think about mental illness is actually being able to describe how you feel.

“If I needed to go to the doctor or a counsellor, I would have a really hard time vocalising any problems that I was having. So I would always write them down instead and just give them the paper and say ‘this is how I’m feeling’.”

Not only have Forney and Correll’s comics helped them personally, they have also helped readers find solidarity and recognise their own mental health challenges.

One of Gemma’s readers told her the comic “helped me articulate how I feel like I haven’t been able to put it into words until now”.

While many people with mental illness can feel alone in their experience, Forney has also been able to find company through graphic medicine.

She said that after releasing Marbles she was “blown away and delighted to find that there was this whole community of people who also found that comics [were] an important and really valuable way to tell these stories of health”.

Dr. Ian Williams, a cartoonist and physician based in Brighton, UK, was the first to coin the term “graphic medicine” and created the Graphic Medicine organisation which brings artists and enthusiasts together.

He did so while studying for a medical humanities degree “partially as an excuse to put off getting down to writing my dissertation,” he says.

Williams defines graphic medicine as “anything that happens or is happening at the interface between the medium of comics and the discourse of healthcare”.

While Covid-19 has put a stop to any physical events in the past year, it has not stopped the community coming together.

The organisation, Graphic Medicine, has held monthly virtual meet-ups called Drawing Together where the community comes together to draw, support one another and share.

They hope physical events may be able to take place soon.

While it was initially terrifying to be vulnerable and publish personal comics, Forney says: “I really, really wish that everyone with a mental disorder could have the experience of talking about it and getting the reaction of people saying ‘me too!’

“It’s astounding… It’s given me a lot of strength to the point where I can just talk about it with the guy on the airplane next to me.”

Silenced: The Hidden Story of Disabled Britain Review – Have Attitudes Changed?

January 20, 2021

Children’s TV presenters are often at the forefront of social change. Perhaps this is because – as one of the people interviewed in Silenced: The Hidden Story of Disabled Britain (BBC Two) remarked – “children are much better at inclusion” than their angry-letter-writing, Ofcom-complaint-making parents.

Ben Cajee, of the current CBeebies cohort, won praise for his age-appropriate discussion of racism in October, but in 2009 it was his predecessor Cerrie Burnell who inadvertently became an activist. Burnell was born with a right arm that ends just below the elbow. She hadn’t set out to champion the rights of disabled people – all she wanted was to introduce another episode of Balamory – but when parents complained that her appearance was “scaring children”, she did just that.

Where do such prejudices against disabled people come from? This documentary saw Burnell explore that question, finding the beginnings of an answer in the archives of a workhouse in Southwell, Nottinghamshire. There, page after page of an 1861 parliamentary report reduced human beings to labels such as “feeble-minded”, an umbrella term covering all manner of physical and mental conditions. In Victorian Britain, disabled and impoverished people were routinely shut away from the rest of society in workhouses. When Burnell tentatively suggested that “a shadow of that has carried on, in a way”, the continuity was striking. It was in this 19th-century hell that the 21st century’s punitive attitudes towards benefits recipients took root.Advertisementhttps://ca7854385c621049340c3956dcb35e30.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

Not everyone was content to leave disabled people to fend for themselves, however. Burnell’s history is littered with misguided do-gooders, such as the Manchester-area benefactor Mary Dendy, whose attempts to save Britain from “this evil” caused generations of misery. A committed eugenicist, she dedicated her life to founding Sandlebridge Colony, “a home for the permanent care of the feeble-minded”, and campaigning for the Mental Deficiency Act of 1913, which gave authorities sweeping powers to institutionalise people against their will.

At this point, Silenced shifted in tone from Who Do You Think You Are? social history to an unusually bleak episode of ITV’s reunion show Long Lost Family. Brothers David and Alan Gambell only discovered the existence of an older sister, Jean, in 2007 after opening a letter addressed to their long-dead mother. Jean had been shut away in a Macclesfield care home for more than 70 years, but, when the brothers were at last able to visit, she immediately recognised them and greeted them by name. “Within weeks, she died,” said David. “She was just hanging on to see her family at long last.”Cerrie Burnell: ‘Disabled people have been shut away during the pandemic’Read more


It was all getting almost unbearably sad by the time the first heroes of Burnell’s history emerged to point the way forward. There was Dr Ludwig Guttmann, a Jewish spinal injuries specialist who fled Nazi Germany, then used competitive sports to restore the confidence of his paraplegic patients in England, ultimately founding the Paralympic Games. Later, in 1972, the trailblazer Paul Hunt wrote a letter to the Guardian calling for the formation of the Union of the Physically Impaired Against Segregation (UPIAS), resulting in the development of the social model of disability. This was the revolutionary idea that people were not disabled by their impairment or difference, but by a society that, for example, had no wheelchair ramps at train stations.

Particularly badass, though, were the disability rights activists Jane Campbell and Alia Hassan, who recalled for Burnell the thrill of “bringing London to a standstill” with their direct action campaign in the 80s. The look of baffled insult on Chris Tarrant’s face when he emerged from the Telethon ’92 charity fundraiser at LWT studios to a crowd of protesters holding “Piss on Pity” placards was a picture. It does seem, though, that the producers missed a trick in not approaching Tarrant for an updated comment. What better case study on how popular attitudes to disabled people have – or haven’t – changed over the past 30 years?

The history of disabled Britain features plenty of heroes to inspire, but what Silenced so movingly illustrated is that this is not really the story of individuals who overcame the odds. In fact, it is the story of how entire communities can – and must – open up to include humans in all our variety. So, it felt appropriate to give the last word to Micheline Mason, a campaigner for integrated schools from a time before CBeebies: “When people saw the non-disabled kids saying we want our friends in school with us, we had a lot of fun together, y’know, that’s what changes people. You almost can’t argue about it any more.”

Cerrie Burnell: ‘Disabled People Have Been Shut Away During The Pandemic’

January 20, 2021

“As a disabled person you have to be so political every day,” says Cerrie Burnell, “just in how you go about your life; being joyful has to be a choice because you are told at the beginning that you’re not really welcome here or there is something wrong with you.”

Burnell, a former presenter on the children’s channel CBeebies was born without the lower part of her right arm. The subject of prejudice by some parents when she got the CBeebies job, Burnell – also an actor and writer – explores the origins of negative attitudes towards disability in a BBC Two documentary on Tuesday, Silenced: The Hidden Story of Disabled Britain.

Part of a BBC season marking the 25th anniversary of the Disability Discrimination Act (DDA), the programme asks why disabled people have been ostracised from society, charts the battle for rights and concludes that, despite the freedoms won, much progress still needs to be made.The Guardian view on disability rights: a deficit of attentionRead more

Burnell describes the show as “a wake-up call but not in a shouty way”, and says making it opened her eyes to the systemic ableism that has led to those with disabilities being treated as inferior.Advertisementhttps://ca79172aac41300fd236dc2688508619.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

In Great Britain, just over half of disabled people (52.5%) are in employment, compared with 76.3% for the population as a whole,while statistics for England show that for those with a learning disability, the figure is only 5.6%.

Burnell cites the DDA as the most significant advance made for UK disability rights, although she is shocked at how relatively recently it was introduced.

“People had been campaigning since the 60s to have the right to choose where to live or how to dress or to have a relationship or to have children or to get to keep those children. All of those things had been taken away from us.”

The documentary follows Burnell as she questions why the prejudice towards disabled people dating back centuries persists today. Contemporary attitudes, she learns, were shaped by the segregation of disabled people, first in workhouses and then in 20th-century institutions that admitted children with physical and learning disabilities and where they remained shut away for decades.

She also meets some of the trailblazers and crusaders who campaigned for disability rights and inclusive education and pioneered independent living.

But she warns that rights fought for over decades can swiftly be lost. Disabled people had already been badly affected by austerity policies – which have led to cuts to welfare payments and social care funding, and made it harder for disabled people to live independently – and she feels that disabled people have “yet again been segregated and shut away” during the coronavirus crisis.

The first thing the public heard during the pandemic was that people didn’t have to worry about the virus as long as they didn’t have an underlying health condition, says Burnell. “Well, what if you do?” she asks. “It doesn’t mean that your life is any less valuable and again it is the disabled community who suffered the most throughout the pandemic and the death toll has been high.”

Figures from the Office for National Statistics show that in England and Wales, disabled people account for almost six in 10 (59%) of all deaths involving Covid-19.

The fallout from the pandemic will be “brutal”, says Burnell, and “isn’t just going to suddenly end when everyone has been vaccinated because we’ll have lost so many people and services will be readjusting to the aftermath of the crisis”. She feels the emotional impact of the past year will take many people time to recover from, whether they were feeling anxious about going back into the world after isolating or they are working in overstretched public services.

Post-pandemic recovery plans must focus on improving access to spaces – from workplaces to cafes and other venues and better awareness of disability issues, Burnell believes. She especially wants disability to no longer be viewed as a barrier to employment, learning and living a full life.

“I think there is going to be a huge amount of anxiety going back out into the world,” she says. “The world wasn’t particularly kind to disabled people before the pandemic, so a lot of those small victories are going to have to be refought for.”

Burnell hopes her work – whether on this documentary, presenting on CBeebies or as an author – will help to play a part in “normalising” disability. She looks back fondly on her time on the children’s channel.

“I got to do a job that I loved and it was fabulous that it started conversations about disability,” she says, “but it is still very telling that it was needed. Now when you see someone on screen with one hand, without a prosthetic, hopefully it is less jarring than it was pre my time on CBeebies.”

In a 2011 Guardian interview, she called for more positive disabled icons – so have things improved over the past decade? She says advances have been made in getting more disabled actors on screen, citing Silent Witness’s Liz Carr, rock musician, actor and writer Mat Fraser, Years and Years star Ruth Madeley and Melissa Johns, who has appeared in Coronation Street and BBC drama Life.

“Of course there is further to go, there always is,” she adds. “While there may be many working disabled actors, we are not yet at the point where we have got superstars, but that day is coming. I have much hope and I hope to be part of that change.”

She hopes eventually to see the media present more nuanced narratives of disabled people’s lives, beyond the current binary of misery or triumph over adversity: “We never explore things in a non-obvious way, we never explore the subtleties, the love or the joy.”

Curriculum vitae

Age: 41.

Family: Solo parent to a daughter.

Education: Cavendish secondary school, Eastbourne; Manchester Metropolitan University (acting).

Career: 2018-present: actor, author and TV presenter; 2018: actor, Doctors; 2018: presenter, Matron, Medicine and me; 2009-17, presenter on CBeebies, along with other shows such as The One Show and The Wright Stuff; 2002-08, actor, various roles, including The Bill, Holby City, EastEnders and Grange Hill; 2002-08: playwright.

Public life: Writer in residence, Booktrust.

Interests: Beach volleyball, ice skating, yoga and meditation.

  • Silenced: The Hidden Story of Disabled Britain is on BBC Two at 9pm on 19 January and available on iPlayer after that

Government Survey On Disability

January 20, 2021

Same Difference has been sent the following by Gemma Cook, a friend of the site:

Hi Sarah

Hope you’re well and keeping safe. Just wondering whether you know about this government survey and opportunity to influence disability strategy

https://disabilityunit.citizenspace.com/cabinet-office/ukdisabilitysurvey/

Best Wishes

Gemma

Please click the link if you wish to find out more about the survey, or to participate.

The Artists Using Dyslexia As A Creative Force

January 20, 2021

Two artists have been brought together through their personal experiences of dyslexia for a new arts project.

Turnberry-based Mark Stoddart has been a designer for 30 years, while Angus Hepburn, from Angus, has been looking for ways to give his career a boost.

Stoddart, whose bronze sculptures are produced at an Edinburgh foundry, has offered to fund the production of one of Hepburn’s designs.

Dyslexia Scotland put the artists in touch with each other.

Stoddart, who struggled with his dyslexia as a child, is an ambassador for the charity.

His artwork includes a life-size Model T Ford which was installed in Fort William to recall the driving of one of the American cars to the summit of Ben Nevis in 1911.

To mark the 30th anniversary of his career, he wanted to give something back by helping an artist in the early stages of their career.

Hepburn, 35, had worked in London after graduating from Gray’s School of Art in Aberdeen with a BA in Visual Communication.

But after a series of unpaid placements and having to supplement his art by working in the hospitality industry, he decided to return home to Scotland.

He has been volunteering at Hospitalfield House Arts Centre in Arbroath while applying for jobs, a task made tougher due to the impact of the Covid pandemic on businesses.

A meeting with the career service at Dyslexia Scotland led to Hepburn being put in touch with Stoddart.

Both men have faced challenges due to their dyslexia.

Stoddart said that as a child he was “introverted, withdrawn” and had “zero confidence”.

His life was turned around by the care and teaching he received at a school in Sussex between the ages of 13 and 18.

Hepburn said he had enjoyed “amazing support” from his teachers

However, he added: “I’d found the world of work difficult, as the stigma associated with dyslexia can be very strong.

“Through my art, I had managed to overcome many of the obstacles I faced in my youth, but as a man, I felt I needed a bit of direction to translate my ideas and vision into an artistic reality and to make my mark, and my living, as an artist.”

He added: “It is just about catching a break. The opportunity to work with Mark came out of the blue.”

Stoddart said: “When I learned about Angus and his desire to use his dyslexia as a creative force, I was instantly reminded of my own sometimes difficult experiences in school and work.

“His motivation to do his own thing and forge his own artistic path directly matched my own ambitions as a young man, and I was delighted and humbled that Dyslexia Scotland thought of me as a mentor to Angus.”

The designer added: “After 30 years in the art business, I can help Angus polish his designs and avoid some of the pitfalls that lie between idea and execution.”

DWP Incompetence And Institutional Callousness Caused Claimant’s Death

January 19, 2021

With many thanks to Benefits And Work.

 

DWP incompetence and institutional callousness caused the death of claimant Philippa Day, evidence given to a coroner’s inquest seems to suggest.

Philippa Day, who had type 1 diabetes and had been diagnosed as having emotionally unstable personality disorder (EUPD), anxiety, depression and agoraphobia, took her own life after she was given no choice but to attend a PIP assessment or lose her benefits.

Philippa, 27, had been receiving DLA since she was 16 but made a claim for PIP in November 2018. However, the DWP lost her PIP application form and then stopped her DLA in January 2019.

The inquest heard from a DWP call handler who spoke to Philippa in June 2019 when she was trying to find out why here benefits were still suspended.

A sobbing Philippa told the DWP worker that she was “literally starving and cold”, “genuinely can’t survive like this for much longer”, was “in so much debt”, “literally cannot leave the house”, and needed “a reason to live”.

However, the call handler failed to raise the issue with a case manager and said that she couldn’t recall why she had hadn’t done so in spite of the claimant’s obvious distress, adding that is was “quite usual” for claimants to cry during calls.

In fact, a case manager had examined Philippa’s case in March 2019 and confirmed the decision to stop her benefits, in spite of a note on her file which said Philippa was “quite unwell with mental health”.

The case manager also admitted that she had not been given information about Philippa’s mental distress which had been passed on by a community psychiatric nurse (CPN) the week before the decision to stop her benefits.

In a further error, the DWP had recorded the evidence as having come from Philippa herself rather than a CPN.

Philippa’s unconscious body was found by her sister and father on 8 August 2019, just days after she had been told she would need to attend an assessment centre for a face-to-face appointment to decide her new personal independence payment (PIP) claim.

This was in spite of the fact that Philippa’s CPN had told Capita of the enormous distress the thought of attending an assessment centre was causing her.

On the pillow next to her was the appointment letter from Capita.

The inquest continues.

You can read the full story on the Disability News Service website here and also here

Who’s Exempt From Wearing Masks?

January 19, 2021

“My heart races, I get really hot and start sweating, I start shaking, all the noise in the shop seems to get louder and the lights seem to get brighter.”

That’s how it feels when Georgina Spray puts on a face covering.

The 21-year-old has autism and is exempt from wearing one. But she’s so worried about being confronted, she chooses to put one on anyway.

The problem for Georgina is there’s still no official way of proving you’re exempt.

Face coverings are compulsory in almost all public indoor areas across the UK.

And with many of the big supermarkets saying they’ll deny entry to people who don’t wear masks unless there’s a genuine reason, Georgina worries the chance of abuse rises.

So, who counts as ‘exempt’?

The list is long and fairly vague. Around the UK advice is slightly different but in general, if you can’t put one on or wear one due to an illness, impairment or disability, you don’t have to.

You’re also exempt if they’re likely to cause you “severe distress”.

The problem is, it isn’t easy to tell if someone’s exempt just by looking at them – and that’s where confrontations can happen.

Last year, a number of mental health and disability charities wrote to the Government in England, asking ministers to provide a “recognised badge [or] identifier to signify the wearer as exempt”.

That hasn’t happened. Instead, there are templates you can print off, depending on where you live.

UK Government exemption card template

A picture of a Welsh Government exemption card

“I have a few sensory problems,” Georgina tells Radio 1 Newsbeat.

“It is stressful enough going into a shop when you have autism – with the background music, beeps of the till, customer announcements, people talking, bright lights, humming of the fridges and freezers. Adding a face covering is too much for many autistic people to bear.”

She’s glad shops are clamping down but worries about being mixed up with people who are “determined to break the rules” and lie about being exempt.

“I don’t carry my diagnosis letter and assessment scores around with me and people often say to me, ‘You don’t look disabled’.”

Georgina’s seen videos online of people without masks being abused by others – and says the possibility of that happening to her is worse than having to wear a mask.

“I know I wouldn’t be able to stand up for myself.”

2px presentational grey line

Drew Miller Hyndman, disability reporter BBC Ouch

Not having to wear a mask might seem like a privilege to those of us made to wear them, but exempt people feel understandably anxious about being less protected when going out.

On top of the risk of catching the virus, some have faced abuse in public and the vague guidance on who is and isn’t exempt hasn’t helped.

Victims of this abuse have called upon the government to recognise the sunflower lanyard as a clear way to signal that a person is exempt.

The lanyards were originally created for people with invisible disabilities to signal their impairment but the charity that makes them recently created a mask exempt version after a surge in popularity.

Ultimately, the new supermarket crackdown could stop members of the public taking the rules into their own hands, since staff are now checking at the door.

However, mask exempt people may now find themselves repeatedly explaining their exemption each time they go out.

Our readers have recommended anyone facing abuse for not wearing a mask when exempt should walk away and find shop staff.

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Unlike the disability Blue Badge scheme, you don’t have to prove you’re exempt from face coverings – and there’s no legal requirement to carry an exemption card.

Until there’s something more official, Georgina will carry on wearing one, despite the distress it causes.

“If I was confronted, I’d probably be awake all night replaying the situation in my head and what I should have said or done differently.

“If I went through a situation like this my anxiety would be so high that I’d be scared to leave the house.”

Sign Language: Seven-Year-Old Teaching Classmates

January 19, 2021

A seven-year-old schoolboy from Belfast has been teaching British Sign Language to classmates throughout the lockdowns.

Jensen Rea, who is deaf in one ear, started making videos on his YouTube channel last April to teach friends at Dundonald Primary School some sign language.

The Year Three pupil often dresses up in elaborate costumes and signs along to his favourite songs for his videos.

Jensen and his mum, Gillian Douglas-Rea, hope the videos will get more children learning BSL.

Autism: ‘They Said Bleach Would Cure My Daughter’

January 18, 2021

“I’ve had people offer me products to ‘kill the autism’ – bleach, salts, supplements.”

For Yvonne Odukwe, a Nigerian living in Newport, community stigma around her daughter’s autism is a barrier – but it’s only half of a “double whammy”.

She and others say black, Asian and minority ethnic (BAME) people can also face poor engagement from authorities.

The Welsh Government said its national autism team “regularly engages with BAME communities” among other steps.

“It’s a double layer,” said Yvonne, mother of 19-year-old Jasmine.

“I’m fighting the mainstream and then I’m also fighting my community because they’re not accepting me and, in many cases, blaming and shaming me.”

Autism is a lifelong development disability which affects how people see, hear and interact with the world.

Yvonne, a mother-of-three, said that like many parents of autistic children, she’d had to fight to get Jasmine support, but many parents from backgrounds like hers must also overcome a code of secrecy in the community.

“There’s that fear and unease – something we don’t know, we don’t accept,” she said.

“So because of that, there’s the stigma. You don’t talk about autism, it’s kind of like a shame to even admit that you have a child with autism.”

Yvonne said she had heard stories in relation to different Asian and African communities where autism was attributed to witchcraft, curses or bad parenting.

“I had a friend who had a son with autism and she was asked to bring the boy home so that they can do an exorcism,” she said.

“It’s not seen as a condition, it’s more like someone’s done something to you or you’ve done something wrong.”

After receiving requests for help and advice from other BAME parents, Yvonne set up a Facebook support group and podcast to signpost, refer and “hand-hold”, though for many people the barriers prove too much to overcome.

“We are coming from communities where there’s a blame game,” she said.

“So, for some of us that want to get the services, we have to maybe hide. You want the services but you don’t want to shout it from the rooftops.

“Now, when I go out to get the services, I look around – I’m the only person of colour in the room. It takes someone with courage to want to sit it out and some people at the door, they go back.”

She said if you “flip the coin”, she had also spoken to service-providers, agencies and charities that struggled to attract families from some BAME communities to outreach events, with no clue why.

“There’s a big disconnect between the people that want to give the services and the families that want to receive it,” she said.

The National Autistic Society says its research suggests it can be harder for people from BAME backgrounds to get a diagnosis and support.

School census figures show that in Wales’ mainstream schools only 8.4% of pupils aged five and over who are diagnosed with autism spectrum disorder (ASD) are from BAME communities, whereas 11.8% of all pupils identify as BAME.

However, the rate is higher in special schools, where only 10.6% of all pupils identify as BAME and yet 11.8% of pupils diagnosed with ASD come from those communities.

Dr Chris Papadopoulos, a public health lecturer at the University of Bedfordshire who has done research into the stigma of autism, said there was “emerging evidence” BAME people faced longer waits for diagnoses and support than white populations.

“Firstly, the services aren’t particularly culturally competent,” he said.

“Often, they misunderstand how to communicate with these particular ethnic minorities and therefore, as a result, these communities often don’t trust the services and don’t want to access them.”

On the other hand, he said, there was often a problem with knowledge among some groups.

“They don’t necessarily understand autism very well, they may not identify it among their children at an early age and therefore they attempt to access support only at a late stage, so they might have missed the boat.”

Dr Papadopoulos said there was evidence some communities’ perceptions of autism helped foster stigma, secrecy and isolation. https://emp.bbc.co.uk/emp/SMPj/2.36.7/iframe.htmlmedia captionCampaigner Hazel Lim, whose son is autistic, said some people in the Chinese community think autism is a “contagious disease”

“Some are more likely to see autism as a result of a past sin in a past life and that therefore needs purging or curing, and other communities see it as something that should be feared and perhaps associated with danger; and other communities are a little bit ahead of the game and view it a bit more as a difference as opposed to a problem,” he added.

Dr Papadopoulos said he had heard examples of autistic children being subjected to “very dangerous treatments”.

“You cannot cure autism,” he said. “You should not attempt to cure autism. Autism is simply a difference that doesn’t need healing.”

Race Council Cymru has previously said grass-roots, ethnic minority organisations need to be encouraged to talk about autism more to remove stigma.

But Dr Papadopoulos said the onus was on public authorities to engage with community leaders and religious figures who have “problematic” views of autism.

“Services need to access these communities by showing that they can understand the cultural values of those particular communities, but they can actually implement a supportive, compassionate, good service as well,” he added.

The Welsh Government said: “Our National Autism Team regularly engages with BAME communities in Wales and promotes educational resources about autism and BAME.

“Local neuro developmental teams work directly with families of children with autism and a scheme has been developed in Cardiff specifically for families who do not speak English as a first language.

“We also fund a cultural competence accreditation scheme which is open to all health organisations in Wales.

“The National Autism Team does not offer autism diagnostic assessments, however the seven integrated autism services in Wales provide adult autism diagnostic assessment (sometimes jointly with other services), support and advice for autistic adults, parents/ carers, and professionals.”

Covid-19: Special School Staff Want Jab Priority

January 15, 2021

Parents of children with special educational needs and disabilities are calling for teachers in special schools to be vaccinated against Covid-19.

Many parents have been told their children cannot attend school because of safety concerns about the virus.

Now they want staff in special schools to be prioritised for the vaccine and considered front-line workers.

The government said special schools should encourage pupils to attend.

Staff in special schools are often required to provide personal and medical care for pupils, such as clearing tracheotomies, on top of regular teaching responsibilities.

The schools also offer precious respite to many families of disabled children who require a lot of additional care.

Laura Godfrey, 33, from Norwich, is mum to nine-year-old Oscar, who usually attends a school for children with complex needs. His return was delayed at the start of term, despite government advice for these schools to remain open.

“His school provision is essential to us as a family. Oscar’s mental health suffered a lot in the first lockdown, as did mine. It was a very dark time.”

He is currently attending school, but Laura worries it could be forced to close in the event of an outbreak.

She is calling for staff at special schools to be given PPE and access to the vaccine, to keep schools open and protect vulnerable pupils.

“They should be recognised and treated as front-line staff and afforded the same protections.”

Laura’s calls have been echoed by Mark Powell, CEO of the Dorset-based Diverse Abilities charity which runs a special school in Poole.

The school bought its own PPE in order to remain open during the pandemic but said it was “very difficult and extremely costly”.

Mr Powell described PPE as a “wonderful barrier to prevent the spread of the virus” but said it had also been “a devastating barrier to the development and well-being of our pupils”.

“The fact we have nurses, physiotherapists, and occupational therapists on site to form part of our children’s school provision means that our school can be classified as a health setting, which are at the top of the list for priority vaccinations.”

The Department for Education said the impact of being out of education “can be greatest on vulnerable children and those with education, health and care plans”.

It said special schools should “continue to welcome and encourage pupils to go into school full-time” where possible and “ensure pupils with Send can successfully access remote education” if they are unable to attend.

Stammering: ‘I Thought It Made Me A Failure’

January 14, 2021

Next week Joe Biden will be inaugurated as the 46th President of the United States. He will also become the first president to have a stammer. It’s a condition that affects around 1.5 million adults across the UK.

The BBC’s Felicity Baker reports on what it’s like to live with this often hidden disability.

James Brokenshire Steps Back From Ministerial Role For Cancer Surgery

January 13, 2021

Home Office Minister James Brokenshire, who was diagnosed with lung cancer three years ago, is taking leave to have surgery on a lung tumour.

The Old Bexley and Sidcup MP resigned as Northern Ireland secretary in 2018 for surgery to remove a lesion on his right lung.

On Monday he confirmed that “frustratingly” there had been a recurrence of a tumour there.

He said he was in “good hands” with the “fantastic NHS team” looking after him.

“[I’m] keeping positive and blessed to have the love of Cathy and the kids to support me through this,” the 53-year-old wrote on Twitter.

Prime Minister Boris Johnson Boris Johnson said his thoughts were with Mr Brokenshire and his family.

“Wishing you all the best for your treatment and looking forward to welcoming you back on the team soon,” he added.

Home Secretary Priti Patel said she was “saddened” by the news, adding: “All my thoughts and prayers are with James and his family during this time”.

“All colleagues across government send James our love and best wishes, and we look forward to having him back soon,” she added.

Health secretary Matt Hancock was among government colleagues wishing him well, adding he was “sending my best wishes for a speedy recovery”.

Labour leader Sir Keir Starmer tweeted: “Wishing you all the best for your treatment, James. Get well soon.”

Mr Brokenshire, who was first elected to Parliament in 2005 as MP for the former constituency of Hornchurch, has also previously served as housing secretary under former PM Theresa May.

He has called for efforts to “break some of the stigma around lung cancer” and raise awareness of the disease.

Walking At An Airport Is Not Enough To Disqualify You From PIP Mobility

January 13, 2021

With many thanks to Benefits And Work.

An upper tribunal judge has overruled a decision by a first-tier tribunal that a claimant’s ability to walk at an airport was conclusive evidence that they did not qualify for the mobility component of personal independence payment (PIP).

The claimant, who had a spinal injury, had made three trips to Egypt since January 2017. She had been able to use a wheelchair at Manchester airport but not at plane changes in Turkey or on arrival in Egypt.

In addition, the claimant had not been able to take her Tramadol to Egypt as it was illegal there.

When the claimant applied for PIP in September 2017 she did not score any points at all.

On appeal, the first tier tribunal awarded her 6 daily living points and 4 points for mobility descriptor 2b “Can stand and then move more than 50 metres but no more than 200 metres either aided or unaided.”

The claimant appealed to the upper tribunal.

The upper tribunal judge turned to a disability living allowance decision, JT v SSWP (DLA) [2013] UKUT 0221 (AAC), explaining that at one time “it was really quite common, in the context of disability living allowance, to see findings and reasoning with respect to entitlement to the mobility component of that benefit based, at least in part, upon walking which had been undertaken at airports.”

In the DLA decision, the judge held that reliance on a one-off trip abroad to decide walking abilities was “notoriously prone to difficulties.”

The judge held that: “tribunals need to be astute to examine the reasons why a walk through an airport may have been undertaken despite the pain it may have brought on (e.g. to get to a wedding or visit a sick relative – see CDLA/2108/2010), and to bear in mind that it is in most, if not all, cases walking that is not normally undertaken. This is important because if, as here, the walking at the airport is a key aspect of the evidence relied on by the tribunal, it needs to be able to explain why this one-off walking is demonstrative of the claimant’s overall walking ability.”

The judge in the current PIP case, Judge Hemingway, decided that although the walking test for PIP is different to the test for DLA, they are sufficiently similar that the tribunal should have followed the guidance in the DLA decision.

Judge Hemingway went on to find that the first tier tribunal: “does not appear to have made detailed enquiry as to the nature of the walking which was undertaken during the course of the three trips to Egypt. It did not explain why the walking on those relatively isolated occasions might be demonstrative of the claimant’s overall walking ability. It might have been, for example, that the claimant was making additional effort or was prepared to walk through pain, on those occasions, in circumstances where she would not normally have done so.”

The case was sent back to a different first tier tribunal to be heard afresh.

So, much though it may distress the DWP, the judge has found that claimants are entitled to put themselves through considerable pain and discomfort in order to travel abroad, without it resulting in them losing their PIP award.

You can download a copy of LG v Secretary of State for Work and Pensions (PIP): [2020] UKUT 343 (AAC)

Tribunals Must Explain Why It Is Fair To Refuse Your Video Evidence

January 13, 2021

With many thanks to Benefits And Work.

 

An upper tribunal judge has ruled that a tribunal cannot refuse to admit your video evidence unless it gives a clear explanation of why it is fair to do so. Given that the vast majority of hearings are now telephone only, video and photographic evidence could play an important role in future appeals.

In this case, a DLA claimant had been assessed as being on the autism spectrum. His father had asked to submit video evidence to the tribunal of his son walking to show how big and powerful he was and why it was necessary for his father to hold his hand when he was walking outdoors.

This evidence related to a key issue in the appeal, that the claimant regularly required restraint.

The tribunal did not admit the video evidence and gave no explanation for not doing so.

The upper tribunal judge pointed out that tribunals have the power to admit evidence that would not be admissible in a civil trial and also to admit evidence that was not available to a previous decision maker.

Tribunals also have the power to refuse to admit evidence that would be admissible in other courts if, for example, it would be unfair to admit it.

In this case, the upper tribunal judge found that whilst the tribunal had the right to refuse to admit the video evidence, it also had a duty to explain why it was doing so and how it’s refusal met the “overriding objective” to deal with cases fairly and justly.

The judgement is important because almost all hearings are currently telephone only, which means that the tribunal has no opportunity to see the claimant or watch their behaviour in person.

Although the decision is in relation to DLA it is open to claimants to quote it in relation to PIP, ESA and UC appeals. It would be very hard for a tribunal to argue that they were free to ignore it because it is about a different benefit, given that the underlying principle is the same for all benefits.

There may be occasions when video evidence is highly relevant to an appeal. Following this judgement, it is not open to tribunals to refuse to watch videos simply because it is time consuming or technically difficult to do so.

We’d be very interested to hear your experience of submitting videos or photos to an appeal tribunal.

You can download a copy of XTC v SSWP (DLA) [2020] UKUT 342 (AAC)

Talking Disability

January 12, 2021

Michael Rosen is back. In the first in a new series, he meets actress and campaigner Samantha Renke and asks her how we talk about disability.

Dad-To-Be Hopes Embroidered Scans Will Help Blind Parents

January 12, 2021

A blind father-to-be, who was given an embroidered picture of his baby scan as a gift, plans to set up an organisation to help other blind parents.

Nathan Edge, from Mansfield, was given the tactile stitched picture of his baby son’s 12-week scan by his friend Deb Fisher.

He said he had “sort of accepted” he would never see the image and said the present was “a complete shock”.

Now Mr Edge and Ms Fisher plan to help blind parents access similar pictures.

‘Help other people’

Mr Edge, who lost his sight at the age of 19, said: “You can create 3D scan pictures, but it’s an expensive thing to do, and it’s something you often to send to America to get done.”

He described the embroidered scan – which was given as a surprise to him and his partner Emma – as “one of the best gifts” he has ever received.

“It never came to my mind that it could be available to me,” he said.

“That gift has got me thinking of ways that we could change things for blind people in the future.”

Ms Fisher, 44, also from Mansfield, said she had come up with the idea as a simple way to allow Mr Edge to “feel his baby’s face and features”.

The pair are now looking at setting up a not-for-profit organisation – and creating a network of embroidery volunteers – to help blind parents access similar embroidered scans.

Ms Fisher said she had already started contacting volunteers to help.

“The embroidery community are amazing,” she said. “I’ve already heard from volunteers in the south.

“I was just doing a favour for a friend but if we can get something out there, where we can help other people, that’s my main aim now.”

Disability And Dating: ‘Why Do People Think I’m My Boyfriend’s Carer?’

January 12, 2021

Dating is complicated at the best of times, but social stigma means dating someone with a disability is rarely discussed. After Hannah and wheelchair user Shane Burcaw spoke out over online comments dismissing their relationship, we spoke to other couples about their experiences.

After Hannah and Shane recently tied the knot at an intimate home ceremony, they shared a photo of the day on social media.

“We’re husband and wife!!!!” wrote Hannah. “I’m incredibly lucky to now be married to the greatest guy I know.”

But they were met with messages like this:

“For real though… does she also have another partner for having sex with?”

“Is he rich or something?”

“Oh my God… this must be photoshopped.”

The reason, YouTubers Shane and Hannah believe, is because he’s disabled and she’s not. Shane has spinal muscular atrophy and has used a wheelchair since he was two.

The couple, who live in Minneapolis, Minnesota, tell BBC Three that the knee-jerk response reflects how misinformed many people still are towards disability and dating.

“Our society tells us that disabled people aren’t worthy partners,” she says. “There’s almost no positive representation of disability or dating with a disability in our media, so many people think that disabled people couldn’t possibly be in a healthy, wonderful relationship.

“This means when they see Shane and I, they invent conspiracy theories to try to reconcile our relationship with what they’ve been taught.”

‘The media makes disability undesirable’

One survey, from 2014, suggests that 44% of Brits sampled wouldn’t consider having sex with someone who had a physical disability, while 50% wouldn’t rule out the possibility.

Shane, 28, says the lack of positive representation often made him feel like he “would never find a partner”.

“The things I saw in the media made disability out to be extremely undesirable,” he says.

“This led me to believe that most people would not want to be bothered with dating someone who had a disability.”

Hannah, 24, says that while Shane’s disability never bothered her (they got chatting after she saw one of his vlogs online), she’d equally “never met anyone who used a wheelchair or had a physical disability.”

There’s also a debate about how disabled and non-disabled couples describe themselves.

In the US, some couples, including within the disability vlogging community, have started to use the term “interabled”.

But it’s not widely accepted. Some feel it’s an unhelpful reinforcement of narrow-minded, medically-orientated thinking.

“It’s inaccurate and focuses on the physical or mental differences between the two people (or more) in a relationship,” says disability campaigner and broadcaster Mik Scarlet.

“Disabled people spend far too much time trying to get wider society to understand the ‘social model of disability’, which suggests we aren’t disabled by our bodies but the way society treats us, so when a concept like ‘interabled’ takes hold it undoes so much of that work.”

BBC Three spoke to other young couples about their experiences…

‘People assume we’re siblings’

Charlie and Gina

Charlie says…

I have cerebral palsy due to lack of oxygen to the brain at 10 weeks old. I mainly use a wheelchair as I have problems with balance and use of my lower limbs.

Gina and I have been together for just over three years.

Gina’s never been fazed by the disability. She did ask a lot of questions at the beginning of our relationship, but I didn’t mind that. Since she knew that I was disabled from the beginning, and we developed our relationship online, by the time we met in person we were already quite committed and it didn’t matter at all.

In terms of social perceptions, it’s interesting that people often assume we’re siblings. Sure, we’re both ginger, but I think it’s easier for people to assume a disabled person would be out with their family instead of having a partner.

We also get a lot of people thanking or praising Gina for being with me, which makes me sound like a booby prize or that she’s settled for something she shouldn’t have to put up with.

People also seem to think it must be a very one-sided relationship, with Gina doing everything for me. The opposite is true: it’s a two-way street just like everyone else’s relationships. Yes, she may help physically day-to-day but I support her through mental struggles and everyday life.

If there’s one thing I want people to understand it’s that relationships are relationships. They have ups and downs, responsibilities, and care and understanding for each other. Having a disability doesn’t change that. If you’re in a relationship with someone with a disability, it is just that. No ulterior motives.

Gina says…

When we first started chatting, I asked Charlie if he minded if I asked some questions… ice-breakers, life questions. I said he could do the same, and we turned it into a fun, silly game.

A lot of mine involved questions about his disability, but I had said that if I asked a stupid question or one he didn’t want to answer, he didn’t have to. It helped to get a lot covered, so nothing felt awkward when we met.

Fast-forward three years. When we’re out, I’ve got used to the shocked, sympathy look I get when I mention my boyfriend is a wheelchair user or that I have to assist him with certain tasks. People say, “that must be a lot for you… I bet it was difficult to decide whether you wanted to move forward with the relationship.”

The answer, bluntly, is no. I always reply with a compliment to Charlie or explain that no, I am not in a burdensome one-way relationship, but rather with him because he is an amazing, loving and caring person.

I think a lot of the misunderstanding comes from people believing that helping a disabled person can only be a chore – the duty of a paid friend or assistant.

What they fail to understand is that, actually, when I help Charlie, it doesn’t weaken the relationship and take the love away. If anything it heightens it. I never use the word carer for this reason, I am Charlie’s partner through everything.

‘There’s a taboo around disability and sex’

Lucy and Arun

Lucy says…

I have fibromyalgia, a musculoskeletal disability. Symptoms include chronic pain, brain fog, chronic fatigue and probably the one that affects me most – mobility. I regularly require the use of a stick or other support.

I met Arun over two years ago on an exchange programme in Los Angeles. As I’m so open, he fell in love with me knowing about my disability.

Arun understands that my body is very different and unpredictable – he’s not only the most caring person but also the most supportive.

On a day-to-day basis, I need quite a lot of help to stay mobile as I struggle with public transport, can’t walk very far and unfortunately cannot drive at the moment (a lot has to be taken into consideration). I am lucky that Arun drives and will help me run errands like shopping.

The fact that fibro is invisible means we are initially perceived as a couple without the disability, but this means it can come as more of a visible shock to some people.

It’s frustrating, as Arun gets inundated with lots of questions. In public I tend to brush it off a lot more whereas he can get quite hot-headed sometimes. However, at home, I have a lot more panic attacks and breakdowns because it gets incredibly overwhelming.

I wish people would understand that my disability doesn’t entitle you to any more information about my private life compared to anyone else.

That said, there’s definitely a taboo around disability and sex, in that people think you cannot have both.

While this may be true for some cases, I feel people who are disabled have a much deeper appreciation about what it means to be intimate and have sex. It’s not just about penetration (sorry to be so blunt), but I think more about the feelings and emotion, the foreplay and the pleasure.

It’s a whole experience that I think some non-disabled couples would say that they are lacking.

‘Care should exist in all romantic relationships’

Lorna and Rob

Lorna says…

I’ve been with Rob for 11 years, and married for four. We’d been together for about seven years when I was diagnosed with ME, which causes severe fatigue and leaves me often using a wheelchair and housebound most of the time.

It also means Rob has to help me with some personal care, such as showering and other day-to-day tasks.

I would say it absolutely brought us closer as a couple, and continues to do so. I think care within a relationship, although often tricky to navigate, can be so intimate.

This isn’t to say it’s been an easy adjustment, for either of us.

The transition has been difficult for me, as my life has changed so drastically. I had to forgo my career as a teacher and that really impacted my sense of self-worth.

However, I’m lucky that I was able to access some therapy on the NHS and my therapist and I did a lot of work on this. The main thing that helped was reframing what we consider to be “helpful”.

So although I may not be able to do the hoovering or the cooking, I listen to him when he needs to offload about his day. I do the meal plans to ensure we’re both getting a healthy, balanced diet.

The fact is, care of some form should exist in all romantic relationships – abled and disabled – otherwise what exactly are you doing with each other?

In terms of life beyond the home, having a fluctuating condition and chronic fatigue means that we can never really make any concrete plans.

Obviously we still have our moments of frustration, but I would say that it’s actually taught us both to be way more flexible and laid-back, and also to live a little more in the present and appreciate the smaller things that are still accessible to us.

Plus, that guy is like, obsessed with me or something, he’s happy just being with me! Our sex life is strong, mainly because we communicate.

As a society, we still fail to see disabled people as fully realised human beings with the same spectrum of emotional and physical needs as anyone else.

This needs to change. I lost all my confidence and I worried that my husband wouldn’t find me desirable anymore, but that couldn’t be further from the truth.

Plus, I still fancy the pants off my husband, so that always helps.

Olympic & Paralympic Athletes Face Vaccine ‘Moral Dilemma’ – Neil Fachie

January 11, 2021

Athletes face a “moral dilemma” if given priority for the Covid-19 vaccine prior to this summer’s Tokyo Games, said Scottish Paralympian Neil Fachie.

And sprinter Zoey Clark – hoping to make her Olympics debut – says it “will not sit right” with her if athletes take precedence over vulnerable people.

Dick Pound, of the International Olympic Committee, has suggested competitors should be high up the priority list for the vaccine.

Fachie, 36, said it is a moral dilemma.

“It’s an interesting one,” he said. “When that news broke, I was speaking to some of my team-mates about it and the moral dilemma.

“We’re fairly young, fit people who would not be considered high risk for Covid. And the last thing you want to do is take a vaccine away from someone who needs it far more.

“It’s not a great place to be. Should we get offered the vaccine then I imagine I would take it, but there’s definitely a question mark of am I really deserving or not?”

Fellow Scot Clark, 26, believes athletes will “probably” have to be vaccinated for the Games to go ahead.

“Those most at risk have to be vaccinated first,” said Clark. “That being said, if someone offered me the vaccine I would 100% take it.”

The rescheduled 2020 Olympics and Paralympics, due to begin on 23 July and 24 August respectively, remain in doubt with Tokyo having declared a state of emergency over a rise in Covid-19 cases.

The uncertainty has led to an increase in mental health concerns among elite athletes, according to charity Sporting Minds, and Fachie – who has a Paralympic gold and two silvers – says it does have a “destabilising” effect.

“There were many who struggled when the Games were postponed last year, because we sit down four years before the Olympics and set this one day in your calendar that you need to be at your best,” he said.

“It’s a huge life-changing event and if it doesn’t happen, it’s like grieving for the opportunity that’s been taken away from you.”

Clark, who is aiming to represent Team GB in the relay and individual sprint, added: “The Olympics is the pinnacle of your career and everything you work towards.

“Obviously, the uncertainty is there again for this year but we have to prepare like it will go ahead.

Sci-Fi Blindness

January 11, 2021

From Victorian novels to the latest Hollywood blockbusters, sci-fi regularly returns to the theme of blindness.
Peter White, who was heavily influenced as a child by one of the classics, sets out to explore the impact of these explorations of sight on blind and visually impaired people.

He believes a scene in The Day pf the Triffids by John Wyndham imbued him with a strange confidence – and he considers the power of science fiction to present an alternative reality for blind readers precisely at a time when lockdown and social distancing has seen visually impaired people marginalised.

He talks to technology producer Dave Williams about Star Trek The Next Generation’s Chief Engineer Geordi La Forge, Dr Sheri Wells-Jensen talks about Birdbox and world-building from a blind point of view in James L Cambias’s A Darkling Sea. Professor Hannah Thompson of Royal Holloway University of London takes us back to 1910 to consider The Blue Peril – a novel which in some ways is more forward thinking in its depiction of blindness than Hollywood now.

And Doctor Who actor Ellie Wallwork gives us her take on why blindness is so fascinating to the creators of science fiction.

LETTER TO EDITOR: Winning Poem For Revitalise Competition Chosen By Celebs, Shines A Light On Challenges Facing Disabled People And Carers

January 11, 2021

Dear Editor,

I would like to take the opportunity to share with your readers a poem, which was recently selected by our panel of celebrity judges as the winner of the Revitalise 500 competition, which invited disabled people and their carers to describe in under 500 words how life has been for them during the pandemic.

The reason for this is that Britain’s carers are on their knees after nine months of isolation; they have seen their care support abolished and access to vital respite care prohibited. The charity I work for, Revitalise, aims to highlight the highs and lows, the humour and the tears and give people an outlet to share their feelings.

The winner, a poem called ‘Funny, yummy, disabled, single Mummy (a lockdown lament)’ written by Sam Hinton was chosen as the favourite choice and Sam will receive a 7 day respite break at the Revitalise centre of her choice and second and third place have won £250 and £150 Revitalise vouchers respectively, which can be put towards their next Revitalise visit. Excerpts of the top ten entries feature in a new video on Revitalise’s YouTube page.

Funny, Yummy, Disabled Single Mummy (A lockdown lament)

Sometimes disability is hard enough, when you’re tired throughout the day. And working and studying as a single mum leaves little time to play. Especially when you’re on a crutch, and mummified by heat patches. So I thought I’d join a dating site, and check out some new love matches.

And sometimes disability is hard enough, when you’re trying to meet a bloke. Even in this day and age sometimes some men treat you like you’re a joke. I mean, “disability isn’t sexy is it?”, at least that’s what some guys would say. Though I’d beg to differ, in my fancy knickers, I feel relatively ok.

But sometimes disability is hard enough, so when the pools are shut, if you can’t partake in distance sprinting, the government just say “tough luck” What can you do to keep in shape, and keep your pain at bay? When the things you rely on like hydrotherapy are all closed anyway?

And sometimes disability is hard enough, without having to worry about weight gain. For me to have a tidy body is great, since I’m usually miserable with my pain. And of course it shouldn’t matter if we’re different – beautiful in our own design. But online dating is so frustrating, it bores me and I resign

Because sometimes disability is hard enough but when you have to go the extra mile. To make ‘Seductive by the grab rail’, a particular brand of style. “Hypermobile dislocation chic” is something you have to learn work with. And I pay through the nose for self-tan and concealer, ‘cause I bruise like a Granny Smith.

So sometimes disability is hard enough but when your arse gets fatter. Whilst I understand that the size of me shouldn’t even really matter. These little things they do matter to me, my need to look and feel like myself is real. I shouldn’t have to grow a second arse just because of ableist lockdown ideals.

So because my disability is hard enough and I don’t want to be single forever and for me just getting back in shape is a considerable endeavour. Dream man is out there waiting but I don’t feel that sexy when I’m in pain. For goodness sake reopen hydrotherapy so I can get back on the pull again!
 

The winners of the competition were selected by a team of celebrity judges and supporters, including comedian Alexei Sayle, BBC Radio 2 DJ Mark Radcliffe, Paralympic Gold Medalist, David Smith MBE, actor Peter Polycarpou and actress Carol Royle, and excerpts of the top ten feature in a new video on Revitalise’s YouTube page.

Revitalise CEO Jan Tregelles said:


“We were really pleased to receive some genuinely humorous, touching and heartfelt submissions for our Revitalise 500 competition, giving readers a window into the world of disabled people and their carers during the pandemic.

Home carers are amazing, talented people and we’re proud to shine a light on their stories. Congratulations to the winners, we look forward to welcoming you to Revitalise soon.”

To read the entries in full, please go to: https://revitalise.org.uk/blog/ or to show your support for Revitalise, please go to: revitalise.org.uk/donate  
 

Devon Prosser, Revitalise
www.revitalise.org.uk  

Why Deaf Interpreters Are A Crucial Tool During The Pandemic

January 11, 2021

Saamanta Serna describes herself as a Coda – the child of a Deaf adult. She grew up up with a Deaf mother and a father who is hearing and an American sign language (ASL) interpreter, and later decided to pursue interpreting herself after high school.

Now a certified ASL interpreter, Serna has done frequent in-person interpreting for medical appointments during Covid. She has also noticed a change in the world’s perception of sign language since the beginning of the pandemic: more people are paying attention.

Conveying updated information to everyone in the time of Covid is a matter of life or death, as the Trump administration learned recently after losing a groundbreaking federal lawsuit to the National Association for the Deaf, which ensured that a sign language interpreter must be present in Covid briefings and visible on the live feed from the White House. The Trump White House did not include its first sign language interpreter on a Covid briefing until 11 November, a full nine months after the pandemic reached America. Advertisementhttps://7269274448589a74b8c4b33168068965.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

ASL is a common sign language – though by far not the only one – for people who are d/Deaf or hard of hearing (deaf refers to the physical condition of deafness, while Deaf refers to belonging to the Deaf community). About 15% of adults in America report hearing loss, and about 1 million use sign language to communicate. ASL has its own rules and incorporates hand movements as well as facial motions, grammar and word ordering distinct from English, from which it is completely separate. Marla Berkowitz, a certified Deaf interpreter, explains that ASL “entails five parameters: handshapes, palm orientation, location (space on the body, around the signer), movement and of course, facial expressions”.

Even within ASL there are wide variants, differences in rhythm or slang, even regional accents and dialects. Black American Sign Language (BASL), for example, is a dialect of ASL developed during segregation. Black d/Deaf Americans, denied deaf education, socialized language differently than white d/Deaf Americans, with unique hand positions and word formations. Nakia Smith, a 22-year-old who is the fourth deaf generation in her family, explained this recently in a video from Netflix. (Smith’s TikTok channel, which featured her and her grandpa signing and explaining BASL, recently went viral.) https://www.youtube-nocookie.com/embed/3HDm3kx3rhY?wmode=opaque&feature=oembed Facebook Twitter Pinterest

TikTok videos from d/Deaf creators like Smith (her TikTok username is itscharmay) and Diandra Hooper (theoriginaldeafbae) have helped bring sign language to the hearing masses. Instagram and Twitter are also full of accounts featuring video clips where people can learn a sign a day.

Perhaps the interest in signing is due, in part, to pandemic mask-wearing. Masks muffle speech, making it more difficult to communicate using spoken language, even for those who are hearing. For those like me, who are hard of hearing and utilize lip reading, it’s virtually impossible.

More people than ever are also being exposed to sign language through frequent Covid-related press conferences. Alongside governors and medical officers, in press briefings and media events, on television and online, sign language interpreters are working to pass on vital information.

Translating spoken English to sign language requires interpreters like Berkowitz, who is also certified by the supreme court of Ohio and the Ohio department of education. She made national news with her work signing for Ohio’s governor, Mike DeWine. Admirers made a Facebook fan page, and she even has her own bobblehead doll.

I wish that people would normalize this communication access versus just making it a show Saamanta Serna

Other interpreters who have gone viral recently include Nic Zapko, who works with the Minnesota governor, Tim Walz; David Cowan, known for interpreting Governor Brian Kemp’s press conferences in Georgia; and Arkady Belozovsky, who grabbed the world’s attention when he interpreted an intense exchange between the New York governor, Andrew Cuomo, and reporters.

Viewers have been drawn to Berkowitz’s energy, animated manner and expressions. Facial expressions, as Berkowitz said, “are an equivalent to intonation, revealing feelings, thoughts and mood while simultaneously utilizing the grammar markers (eye-gazing, eyebrow raised/lowered …) to distinguish statements from questions”. It’s not simply dramatic effect, but essential to the language. “I wish that people would normalize this communication access versus just making it a show,” said Serna. A Tiktok video from @itscharmay in ASL language.

I talked to Brian Cheslik, the artistic director for Deaf Austin Theatre and an interpreter for performances. Cheslik is also d/Deaf, as is Berkowitz, in a field where many interpreters are hearing.

“There is a stark difference in the interpretation style between Deaf and hearing interpreters,” Cheslik said. “Often, Deaf interpreters are native signers [since birth], so their signing style incorporates Deaf cultural norms, whereas hearing interpreters have a different style … as a Deaf person, I can always tell if an interpreter is Deaf or hearing.”

Berkowitz described hearing interpreters as “second-language users. Deaf people are not an ethnic monolith and require interpreting training to be certified Deaf interpreters, yet to work as an interpreter, one has to be bilingual – ASL and English – as well as [to have] inherited cultural knowledge and nuances.”

Both Cheslik and Berkowitz spoke to the importance of working together with hearing interpreters, especially when information may be impromptu or rapidly evolving. “I cherish my hearing interpreters on my team because they are always there to help me when I miss something, or if there is a change or announcement made,” Cheslik said, characterizing work with hearing interpreters as “a very important relationship”.

Perhaps no recent situation has a more urgent need for clear information than Covid press conferences. These conferences relay ever-changing regulations, and provide essential medical advice on stopping the spread of the virus. “Interpreting during Covid is challenging in every way,” Berkowitz said, describing handling press conference jargon, teamwork with other interpreters who may have different styles, and “the tremendous responsibility with getting accurate information in ASL”.

“The greatest joy is knowing the Deaf and hard of hearing community are receiving first-hand information seen on TV in ASL for the very first time in our lives,” Berkowitz said.

“To have Deaf interpreters spotlighted and highlighted during events like Joe Biden’s press conferences has been so amazing,” says Serna. “Also the fact that that he is normalizing having an interpreter on camera.”

All the interpreters interviewed for this story spoke to the struggle of getting sign language to be respected by the hearing population – a struggle I remember from my own studies, when I fought with my hearing professors who said ASL was not a “real” language, and would not count for my degree.

“ASL is NOT broken English or even a form of English. ASL is an actual language with its own grammatical structure, and syntax that is embedded in Deaf culture,” Cheslik said. “Yes, ASL is beautiful, but it is our language.”

Warning: Failure To Attend PIP Telephone Assessment Penalties Reintroduced

January 8, 2021

With many thanks to Benefits And Work.

 

Claimants who fail to attend a PIP telephone assessment will face having their claim ended, in spite of the pandemic, the DWP revealed in its pre-Christmas edition of Touchbase.

When telephone assessments were introduced for PIP last March, the DWP undertook not to take any action against claimants who did not attend a scheduled assessment.

However, from the week commencing 14 December the DWP have said that:

“PIP telephone assessment appointment letters will make it clear that claimants must attend their telephone appointment. FTA [Failure To Attend] action will apply, e.g. benefit may be stopped for those who have been issued with this letter and fail to attend without good reason.”

The DWP have said that no-one will have their support stopped without being contacted first to ask them to explain why they didn’t attend.

However, if the claimant cannot show a good reason why they didn’t attend, or didn’t take part in, their assessment then their PIP is likely to be stopped.

There is a right of appeal against any such decision.

Worryingly, Benefits and Work has heard from claimants who never received a call from the assessor, in spite of waiting by their telephone at the correct time. In some cases the assessor then claimed that they had repeatedly called the claimant but not received an answer.

For example, one claimant told us:

“Capita did not call. My appointment was at 11.45, I waited and no call was received. I phoned them at 1215hrs and was told that I had failed to attend for my assessment and that they had called 3 times! I was sat with my phone waiting for the call. They then blamed it on Vodafone saying they must have blocked them. I confirmed with Vodafone that no blocks are on my line.”

Another member told us:

“I received my letter on Thursday 4th June, informing me of an appointment on Monday 8th June. I didn’t receive my call at the scheduled time, so called the help centre 10 minutes after my appointment should have started. The person I spoke to advised that I was called 3 times on Friday 5th June as a prep call but that I didn’t answer. There is no notification in the letter that this would take place and I explained that I don’t answer calls from unknown/withheld numbers unless I am expecting such a call and if they had informed me in the letter to expect a prep call, then I would have answered.”

Yet another member told us:

“Appointment at 11.45am. Called capita at 12.05 an was told assessor had rang 3 times and no answer, no missed calls on my phone. I didn’t receive any and was told assessor no wrote no show, made complaint to customer services as to what happened and why recorded as a no show.”

There is detailed advice in our PIP claims guide on how to prepare for a telephone assessment, including what action to take if the call doesn’t arrive and how to obtain evidence from Capita and IAS (Atos) that will help to show whether any calls were actually made.

You can view the 18 December edition of Touchbase here

Blue Badge Permit ‘Shocking Disparity’ Revealed

January 7, 2021

People with non-visible disabilities such as autism or Parkinson’s disease face a “shocking disparity” when applying for a blue badge parking permit, a BBC investigation has found.

Scores of councils have lower approval rates for non-visible disabilities applications compared to those for physical impairments.

Non-visible disability applications began in England in August 2019.

The Department for Transport (DfT) said it would review their impact.

Applications for people with cognitive impairments were already considered in Scotland, Wales and Northern Ireland.

‘Devastating impact’

The BBC Shared Data Unit obtained Freedom of Information Act (FOI) responses from the 216 upper-tier councils across the UK.

Of the 109 councils who gave full responses, eight out of 10 had higher approval rates for people with physical impairments. For ten of those councils, the difference was greater than 50 percentage points.

James Taylor, from the disability charity Scope, said: “This new data shows a shocking disparity between the allocations of blue badges to people with invisible and visible impairments.

“Councils need to understand the devastating impact their negative decision can have.”

The National Autistic Society said the results showed how important it was for councils to improve training to ensure staff understood when people should be entitled to a “lifeline” blue badge.

Dumbbell chart showing disparity for ten local authorities

How was the scheme extended?

Blue badge permits help disabled people to access goods and services, by allowing them to park close to their destination.

The new rules, described as “the biggest change to the scheme in nearly 50 years” when introduced by the Transport Secretary Grant Shapps, widened the eligibility criteria to ensure people with non-visible disabilities were not disadvantaged.

The scheme was changed to include disabilities such as autism, dementia and anxiety.

‘I found it very difficult’

Former magistrates’ court manager Michelle Woodward, who has relapsing remitting multiple sclerosis (MS), had her application for a blue badge and an appeal refused by Oxfordshire County Council in February 2019 before non-visible disabilities applications were introduced.

“It was outrageous at first,” she said.

“Someone must have said to me it would be straight forward, otherwise I wouldn’t have put myself through that stress.

“When I originally applied the guidance said not to mention any toilet issues.

“This was impossible for me because MS has affected my bladder as well as my walking and endurance.

“So when I hit the send button of my online application I instantly received a refusal email.”

She could not re-apply for six months but when she did, she successfully did so under the new guidance.

She said: “I found it very difficult navigating the whole online application system.

“Unfortunately, MS affects your brain power. So I had trouble working my way round the form, trying to attach it. Sometimes I have to get my husband to do it.

“It’s not friendly.

“How many disabled customers are the shops losing because we can’t we can’t use them?

“I feel like I’m not being incorporated with the town. I’ve lived in Oxford for two years but I can’t really familiarise myself with the city.

“There are people worse off than me, how do they cope?”

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Tim Nicholls, head of policy and public affairs at the National Autistic Society, said: “These figures highlight the postcode lottery that has developed around blue badges.

“This must change. Getting a blue badge when you need one shouldn’t depend on where you live.”

The removal of accessible parking bays next to shops and amenities “overnight, without any consultation” to allow for social distancing during the Covid-19 pandemic had also had a “massive impact” on disabled people, Scope said.

The DfT said its review of the new criteria would include considering feedback from users of the online application service.

But people who had applied online told the BBC of the “trauma” of having to produce evidence of their disabilities to be scrutinised, and the difficulty of completing the form. In addition, they spoke of their reluctance to send original personal identity documents such as birth certificates in the post.

Mr Nicholls said a blue badge could facilitate journeys with a carer for someone with autism who may not be able to understand or react to the dangers of the road.

The permit could also help someone with autism overcome their anxiety over not finding a parking space or things going wrong on a trip, which could stop them from leaving the house entirely, he said.

What do councils say?

Councils with the largest disparity between approval rates said they had followed government guidance and helped applicants provide supporting medical evidence.

Councillor David Renard, transport spokesperson for the Local Government Association, which represents councils’ interests, said local authorities wanted to make sure services and communities were as accessible as possible.

About 2.3 million disabled people in England have a blue badge, according to latest data.

Some 28,000 blue badges were issued to people with non-visible disabilities in England in the first 12 months, our investigation found.

Motor Neurone Disease: The Man Losing His Voice, But Singing An Opera

January 7, 2021

Paul Jameson was diagnosed with motor neurone disease (MND) three years ago, and is quickly losing his voice.

But with the help of professional baritone, Roderick ‘Roddy’ Williams, he’s performing his own opera, called Paul’s Aria.

This video was filmed before lockdown.

Guide Dogs: Charity Calls For NI Exemption On New Post-Brexit Rules

January 6, 2021

A guide dog charity has expressed “disappointment” that assistance dogs have not been made exempt from new rules for bringing pets to NI from GB.

This is posing issues both for training puppies in NI and for the lives of existing guide dog users.

The Guide Dogs organisation said the new barrier for assistance dog owners was a “massive disappointment”.

“They now have to make the same preparations to travel to Northern Ireland as if they were going to France, Germany or another European country,” a spokesman said.

He called for “the [UK] government and the EU to come to an agreement which gives assistance dog owners the same freedoms they enjoyed under the Pet Passport Scheme.”

A Department for Environment, Food and Rural Affairs (Defra) spokeswoman said the department was “working closely with the assembly to ensure a long-term solution which supports pet owners and assistance dog users entering Northern Ireland.”

The Guide Dog National Breeding Centre in Leamington Spa in England works with volunteers all over the UK, including Northern Ireland.

Since 2010, 250 pups have been trained, through reward-based training methods, in NI.

However the charity has had to suspend the process of sending pups to NI.

‘Very frustrating’

They are usually sent at about eight weeks so the key socialisation window in a dog’s life may be taken advantage of.

They then cannot travel for a further three weeks, meaning the earliest pups could come to NI from GB would be 15 weeks.

Operations manager for Guide Dogs NI James Copeland said “between nine and 16 weeks are the time when dogs and puppies are sponges”.

He added that for a puppy to travel when they were going through this period would not be best for its welfare.

He said the new rules and subsequent suspension of the scheme was “very frustrating”.

“It is of intrinsic value to NI,” he said, adding that the pet passport scheme was “already strong enough”.

“Our puppy walking scheme is a group of dedicated volunteers led by a staff member,” Mr Copeland told BBC News NI.

It is a core group of about 20-30 volunteers in NI.

Each dog stays with the volunteer for up to 18 months and their carers help with development, go through socialisation and the basic tenets of being a good guide dog.

It will still be possible for trained adult assistance dogs to be supplied to NI, but Mr Copeland expressed concern for existing guide dog owners travelling back and forth to GB or those who live in border areas.

“How feasible is it for someone who lives in Belfast to go to see family and friends in Liverpool and come back to get paperwork for a journey of maybe only three days?” he said

He cited concerns for those who are partially sighted travelling to their vets during Covid to get the form.

“There must be some sort of derogation,” he added.

 

What are the current rules?

If you want to take your pet from England, Scotland or Wales to Northern Ireland, you will have to obtain an AHC, as if you were going on holiday to the EU.

The AHC confirms your pet is microchipped and vaccinated against rabies – pets must be at least 12 weeks old before they can be vaccinated and then wait 21 days after the primary vaccination before travel.

The certificate will have to be presented to a designated travellers’ point of entry in order to undergo the necessary compliance checks.

For entry from Great Britain into Northern Ireland (as well as into the Republic of Ireland, Finland, Norway and Malta), pet dogs will have to be treated against a type of tapeworm (Echinococcus multilocularis), one to five days before arrival.

The government website says: “The UK government recognises that pet owners and assistance dog users will need time to adjust to these changes. It’s working with the Department of Agriculture, Environment and Rural Affairs (Daera) on an enforcement approach that takes these challenges into account.”

An EU pet passport issued in a member state is still valid to enter GB from NI.

Pets travelling from GB to NI will not be subject to routine compliance checks until 1 February 2021.

There will be no changes to the current pet travel health requirements for entry into Great Britain.

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A Defra spokeswoman said the department recognised the vital work of “Guide Dogs UK and continue to work closely with assistance dog organisations and their members to ensure they have the latest advice and guidance”.

“We have ensured there are no changes to the current pet travel rules for entry into Great Britain from Northern Ireland, and are working closely with the Northern Ireland Assembly to ensure a long-term solution which supports pet owners and assistance dog users entering Northern Ireland,” she added.

Tommy Pilling, One Of Britain’s First Husbands With Downs Syndrome, Dies Aged 62

January 5, 2021

Tributes have been paid to the husband from one of Britain’s first married couples with Down’s syndrome, who has died with Covid-19.

Tommy Pilling, 62, from Shoeburyness, Essex, died on 1 January, two weeks after contracting the virus.

Mr Pilling and his wife Maryanne marked their 25th wedding anniversary in July and had been shielding since March.

Mr Pilling’s sister-in-law Lindi Newman wrote, on Facebook: “I will cherish the thousands of memories I have with him.”

In the statement, on the couple’s Facebook page, Ms Newman said: “Thank you for making Maryanne so happy and for being the best uncle my children could ever ask for.

“Thank you for being you and making the world a better place, touching the lives of millions just by being you.

“Marriage made you my brother-in-law, love made you my brother.”

The family said Maryanne and Tommy – who met at a training centre for people with learning disabilities in Southend-on-Sea in 1990 – had only spent 24 hours apart in 30 years before Mr Pilling required hospital treatment in December.

A previous update on their Facebook page added Mrs Pilling was “absolutely lost” without her husband.

They said he tested positive for Covid on 16 December, days after he was admitted to hospital with suspected pneumonia.

Linda Martin, Maryanne’s mother, said she had considered Mr Pilling her son.

She thanked staff at Southend Hospital, Thurrock Community Hospital and Basildon Hospital for their care of him.