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A Tweet About I, Daniel Blake

January 9, 2019
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Spotted on Facebook yesterday,  after the recent screening of I, Daniel Blake on the BBC.

Here is our editor’s review of the movie, from 2016.

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from → disability political policies, politics

Bryan Cranston Defends Role In The Upside

January 8, 2019
by

Bryan Cranston has defended playing a disabled character in his latest film, saying his casting as a man with quadriplegia was “a business decision.”

In The Upside, the US actor plays a wheelchair-using billionaire who hires a former criminal, played by comedian Kevin Hart, to be his live-in carer.

“As actors we’re asked to play other people,” said the Breaking Bad star.

Cranston said the subject was “worthy for debate” and there should be “more opportunities” for disabled actors.

Yet he maintained he was entitled to play characters whose attributes and abilities differed from his own.

“If I, as a straight, older person, and I’m wealthy, I’m very fortunate, does that mean I can’t play a person who is not wealthy, does that mean I can’t play a homosexual?” he mused.

“I don’t know, where does the restriction apply, where is the line for that?” he told the Press Association.

Jake Gyllenhaal and Dwayne Johnson are among others who have faced criticism for playing disabled characters.

Gyllenhaal’s 2017 film Stronger, about a man who lost both legs in the Boston Marathon bombings, was criticised for not casting a disabled actor in the role.

Last year, meanwhile, Johnson was censured for calling for more disabled actors on screen while also playing a man with a prosthetic leg in action film Skyscraper.

Cranston’s comments come in the wake of ongoing debate over whether it is appropriate for straight actors to play gay or transgender roles or for white actors to play characters associated with ethnic minorities.

Scarlett Johansson, Tilda Swinton, Jack Whitehall and Ed Skrein are among those who have faced criticism for accepting certain roles. Some have gone on to withdraw from projects following a backlash.

Last month Darren Criss said he would no longer accept LGBT scripts because he did not want to be “another straight boy taking a gay man’s role”.

The Glee actor played a gay serial killer in American Crime Story: The Assassination of Gianni Versace – a performance that won him an Emmy in December and a Golden Globe on Sunday.

Hart, meanwhile, believes there are always positives to discussions about diversity and inclusion.

“I think having a conversation started is always a good thing,” he said.

“In this particular case, bringing awareness to the fact that hey, we would love to see more disabled people given the opportunities to participate in the entertainment world, and potentially grow.”

The comedian turned actor faced renewed criticism himself recently for comments he made in 2010 about his fears that his son might grow up gay.

Criticism of his remarks led to him stepping down as host of next month’s Oscars ceremony and apologising to the LGBTQ community for his “insensitive words”.

Hart apologised again this week on his SiriusXM radio show, saying he was “now aware” of how his words had make members of the LGBTQ community feel.

“I think that in the times that we’re living in, we have to be understanding and accepting of people and change,” he told his listeners.

Britain’s Ben Whishaw expressed similar sentiments to Cranston’s on Sunday after winning a Golden Globe for playing a gay man in A Very English Scandal.

“I really believe that actors can embody and portray anything and we shouldn’t be defined only by what we are,” said the openly gay actor.

“On the other hand, I think there needs to be greater equality,” he continued. “I would like to see more gay actors playing straight roles.

“It should be an even playing field for everybody. That would be my ideal.”

The Upside, which also stars Nicole Kidman and Julianna Margulies, opens in the UK on 11 January.

The film is the second remake of 2011 French film Intouchables, which was previously remade in Argentina as 2016’s Inseparables.

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from → DisAbility on Screen, discussion

Life On UC With 4% Kidney Function

January 8, 2019
by

Martin Weaver’s doctors have warned him he needs to take better care of himself.

 

They were alarmed to discover the father-of-two is living in a 35-year-old caravan with just a small electric heater to keep warm as the temperature plummeted into the minuses this winter.

 

The 42-year-old, who has had hereditary kidney disease all his life, deteriorated last May when he had a heart attack while he was having dialysis.

 

He was then forced to give up his job as a hotel manager – and become reliant on benefits.

 

But he says Universal Credit just wasn’t providing enough for him to live and pay rent, so he had no other option but to give up his one-bedroom flat.

 

His dietician is “horrified” that he is surviving on beans and tinned tomatoes on toast – which isn’t good for anyone with kidney problems – but he says he can’t afford to buy healthier food.

 

Martin told i: “I don’t know what else I can do, I can’t afford to pay for a house, Universal Credit just doesn’t pay enough for that. The benefits system just isn’t working.”

 

Staying in lay-bys

 

Martin, from Dorset, used to have dialysis at home and his kidney disease was under control until he was 38. When his kidneys started to deteriorate he needed a strong form of treatment in hospital called hemodialysis three times a week for four hours a time.

 

Now both organs are operating at just four per cent and he desperately needs a kidney transplant.

 

But because the hemodialysis has put a strain on his heart he needs surgery to repair this first, which he’s waited seven months for so far.

 

Now Martin, who also suffers from a painful bone condition as a result of the dialysis, gets £670 a month in benefits. His rent came to £540 which left him with £130 for food, gas, electric and council tax bills.

 

He parks at sites that cost from £12 a night and has to move every 28 days. Some times he’s stayed in lay-bys without any amenities when he hasn’t had the money.

 

Martin has two young sons, Max, five, and Tristen, three, who he usually shares custody of with his ex-wife. But now he isn’t keen on letting them come very often to the cold caravan.

 

“Having just over £100 to spend on all outgoings was impossible and it was either live in a caravan or live on the streets,” he said.

 

“Times when I’ve had to stay in lay-bys I’ve had to make do without any heat and use two duvets. “I’m lucky to have got the caravan for free off Facebook. But it does get freezing in the winter and there’s no toilet. I’ve just got a microwave. I haven’t had the gas checked to see if it’s safe. It’s not ideal for young kids.”

Skipping meals

 

As well as being unable to afford to pay towards his children, Martin says he skips lunch. “I usually have cereal for breakfast, then nothing for lunch and then toast with either beans or tinned tomatoes. “People with kidney problems should lower their intake of sodium, potassium and phosphorus, which you find in tinned foods. “I’ve also been told I need to eat more protein because it produces less waste for removal during dialysis. I would love a healthy chicken dinner with veg but I just can’t afford that.

 

“At the hospital they brought me a parcel from the food bank but it was all full of tinned foods.”

 

‘It feels like begging’

 

Martin has launched a GoFundMe appeal to ask for donations from the public.

 

“I hate doing it, it feels like begging when I’ve always worked,” he said. “I put up the page then took it down two days later but have put it back up because I’m desperate. I don’t know how long I will have to wait for the operation.”

 

He explained he had lined up a new house to live in, but is unsure if it will stand up.

 

“It was always difficult for people on benefits to find private landlords willing to let them stay,” he said. “But now it’s even harder. They have read in the press about people waiting 12 weeks for their payments and they don’t want to take the risk.

 

“Dealing with your benefits is all online too, which can be hard or impossible for people on benefits who can’t afford internet or a phone anymore.

 

“It feels like the whole system is set up to make people give up.”

 

A Department for Work and Pensions spokesperson said: “Universal Credit provides a safety net for those who need it and is designed to help people off benefits and into work, because work is the best route out of poverty and the best way to improve your life chances. Anyone struggling with housing costs can also apply for Discretionary Housing Payments.

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from → disability political policies, politics

Claimant Took Own Life After Being Found Fit For Work

January 8, 2019
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A chronically ill dad took his own life just days before Christmas after being told he was fit to return to work – despite doctors warning he was too sick.

Kevin Dooley was found dead after assessors axed his employment support allowance, even though he suffered breathing problems caused by a chronic obstructive pulmonary disease.

His daughter, who tragically found the painter and decorator, spoke of how he was plunged into depression after a grilling by a firm run for the DWP, as the Mirror reports.

She said: “Christmas will never be the same for our family. The Department for Work and Pensions should be disgusted with themselves.

“Over the last year Dad’s illness got worse, and he got less mobile. Whoever deemed him fit for work is a disgrace.”

Dad-of-three Kevin, 48, was signed off five years ago and made ends meet on a £70-a-week ESA benefit and housing support.

“He wanted to work, but couldn’t,” said 27-year-old Leanne.

She told how her dad had his appeal rejected at Leeds Centre for Health and Disability Assessments, run by outsourcing firm Maximus for the DWP.

“He needed regular haematology appointments and was on three inhalers, steroids and antibiotics,” said the mum of two.

“But because he could walk to the shop and at times minded his grandkids, they said he could work.”

After his appeal failed, Kevin became suicidal. Leanne said: “He worried he’d be homeless as he had to reapply for housing support. He said he thought taking his life was the only way out.”

As Jobcentre staff pressured him, Kevin saw a doctor who confirmed he was too ill to work.

Leanne planned to help him take his case to a tribunal – but on December 17 she and twin sisters Paige and Collette, 18, received a text from their dad saying “I love you”.

Leanne found him at home. He died in hospital three days later.

She now plans to tell an inquest about her dad’s ordeal. “He took his life because of what they did to him,” she said.

The Centre for Health and Disability Assessments said: “We make an assessment of how conditions impact on day-to-day life so DWP can make a decision on an individual’s eligibility for benefits.”

The DWP said a Universal Credit advance payment had been made to Mr Dooley on December 8 after the ESA appeal rejection letter on November 29.

It said his “work requirement” had been turned off because he told his work coach he would be challenging the appeal decision.

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from → disability political policies, politics

Carbon Black: ‘Sexy’ Wheelchair Inventor Secures Funding

January 7, 2019
by

Same Difference has covered this story over several years. It is one that has always stayed with us, so we are excited to read this update.

A Scottish inventor has secured almost £400,000 in funding for his design for a wheelchair.

Nairn-based Andrew Slorance was paralysed by a spinal injury after falling from a tree when he was 14.

He has developed his wheelchair, which has been designed to be reduce painful vibrations to its users, through his business Phoenix Instinct.

The Toyota Mobility Foundation, in partnership with Nesta’s Challenge Prize Centre, has awarded the funding.

Mr Slorance, who has spent years working in his design, was one of five finalists to secure prize money. The other winners were from the US, Italy and Japan.

The Scots inventor will use his award to help cover research and development costs.

He said: “I’m so pleased the judges recognised that the wheelchair has proved itself as the most viable mobility device for decades and although it has done well it is now tired and in need of a serious makeover.

“I wanted to show how I think the wheelchair can be evolved while maintaining its core, proven fundamental capabilities that are behind its success as a mobility device.”

Mr Slorance added: “‏I wanted to be part of this challenge because I broke my back when I was 14 which was now 35 years ago.

“By the time I was 16, I’d decided that I would one day design a wheelchair that would change perceptions by using cutting edge materials and styling.”

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More Stories Of Dental Care With LD

January 7, 2019
by

The death of a disabled woman who had all her teeth removed has led to questions being raised about the dental treatment of vulnerable patients.

Rachel Johnston died two weeks after all her teeth were taken out at an NHS Trust criticised for its drastic full extractions from other patients.

The story prompted many people from around the UK to contact the BBC to share their own experiences of hospital dental surgery on people with learning disabilities, with some also telling of loved ones having all their teeth removed at once because of severe decay.

‘They took 17 of my daughter’s teeth without telling me’

Elizabeth Palmer’s daughter Julie Lake, who has severe autism, was seen by a hospital dentist for a check-up, but ended up having 17 teeth out under general anaesthetic.

While her carers were within the hospital building, they and her family did not learn the extent of the treatment until the work had been completed.

“There was just no discussion whatsoever. For her to wake up and lose so many teeth… she kept looking in the mirror at herself afterwards,” said her mother.

“For someone who doesn’t have a real understanding of the world, it must have been an awful shock.”

The operation took place about 12 years ago when Miss Lake, who lives in residential accommodation, was in her late 30s. Her mother thinks her teeth deteriorated because of a lack of daily general care but did not believe they were in such a bad state.

Mrs Palmer was so unhappy with the treatment she hired a solicitor and ended up settling out of court with Surrey and Sussex Healthcare NHS Trust.

“Julie couldn’t have dentures – she wouldn’t cope with them – so she just lost her teeth. There should be earlier intervention.

“Dentists should not be able to extract that many teeth [at one time].”

Des Holden, medical director at Surrey and Sussex Healthcare NHS Trust said it had learnt from previous practice about how to deal with vulnerable patients.

‘Mum never recovered from having all her teeth removed’

Wendy Lees was an intelligent, professional textile artist who took pride in her appearance. In her early 70s she paid for a private dentist to look after her teeth.

But a decade later, after developing Alzheimer’s and having to be cared for in a nursing home, her teeth became so decayed she had to have every single one extracted.

She died weeks after the procedure, on 13 September 2007, aged 82.

Ultimately the cause was connected to Alzheimer’s but her daughter Charlotte said the deterioration of her teeth and subsequent operation made her final months “horrific”.

“There is no doubt whatsoever in my mind that the operation to remove her teeth was instrumental in bringing forwards her death,” said Mrs Lees.

Wendy Lees, of East Molesey, Surrey, had to be looked after in care homes from March 2004 when her husband, Peter, fell ill from the strain of being her full-time carer.

As she had paid for extensive private dental treatment, “her teeth and gums were in pretty immaculate condition when she first went into the homes,” said her daughter.

But a failure to clean her teeth regularly meant they quickly fell into disrepair.

“She just didn’t get her teeth cleaned properly,” said Mrs Lees. “She was not easy to deal with, she could be quite aggressive, so she might have bitten the toothbrush.

“But when she stayed with us we cleaned her teeth, so it was possible to do.”

When a dentist said every tooth needed to be removed, Mrs Lees said she was told several people in the home had also been through the procedure.

“It was said as if to reassure me but I was horrified,” she said.

Mrs Lees has a disabled daughter, aged 26, and says the situation with her mother has made her very anxious about her daughter’s teeth.

“I see a lot of disabled people and it’s really noticeable that a lot of them have problems with their teeth.”

‘I feel like I’m constantly battling to save my son’s teeth’

Robert Moss, 30, finds dental treatment and tooth brushing extremely difficult because of his epilepsy, tuberous sclerosis and severe developmental delay.

His mother Rose Salvin said he now faced losing all of his teeth because of a reluctance by dentists to treat him under general anaesthetic.

Robert has had no intensive dental treatment since having a wisdom tooth removed five years ago.

“I’ve had to fight for him constantly since the day he was born,” said Mrs Salvin, from Stockport.

“When he was in his 20s, the special needs dentist in Wigan said it was worth [putting him under general anaesthetic] once a year to treat his teeth.

“But since then he’s seen another dentist who said his teeth had deteriorated so much he may need to have them all removed.”

Five years ago he had a wisdom tooth removed and several fillings carried out, which his mother said made her cry because “I felt like I hadn’t advocated enough for him”.

She says he has not had any dental work since, although his mouth has been checked over.

General anaesthetics carry risks when being carried out on all patients but the risk is greater for those with a pre-existing health condition.

“I get to see my dentist every six months and get a scale and polish. So why do I have to fight for my son to have basic treatment?” asked Mrs Salvin.

“I constantly feel like he is treated like a second-class citizen.”

‘Services for the vulnerable should not be won by lowest bids’

Malcolm Hamilton, a dentist with the Public Dental Service in Scotland, said he was “saddened” at reading Rachel Johnston’s story and said prevention of dental disease “should still be much higher on everyone’s agenda”.

“All dentists would love to see a greater emphasis on prevention, but especially for those who are most vulnerable,” he said.

“We often have large and elaborate schemes to try to achieve this. But there is very little guidance for those who are not children nor in care homes for the elderly.”

Mr Hamilton said dental services were all suffering from cuts to health care.

“It is more expensive to provide dental care for vulnerable patients,” he added.

“The treatment takes longer, staff require more training, and specialised equipment can be necessary, such as hoists and wheelchair tippers.”

In 2015, NHS England issued guidelines on commissioning special care dental services.

“My argument would be that this sort of service should be a core NHS provision, as it is in Scotland, not to be won by the lowest possible bidder,” said Mr Hamilton.

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from → mainstream madness, updates

SEN Support ‘Taking Too Long’ In England

January 7, 2019
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Thousands of children in England with special educational needs are waiting too long for an education, health and care plan (EHC), the BBC has learned.

The EHC plans set out a child’s needs and the support to which they are entitled.

Once a plan is requested, the law says councils should normally finalise them within 20 weeks.

But through Freedom of Information requests, the BBC has learned around four in 10 plans have taken longer.

Year-long delays

The BBC asked 152 councils in England about the time it took to issue EHC plans.

Sixty-five councils provided comparable data for the last four academic years, starting in 2014-15.

Over that period, 26,505 applications took longer than 20 weeks to finalise – including more than 6,000 last year alone.

Longest individual waits for a finalised EHC plan:

  • Suffolk: 1,023 days
  • Tower Hamlets: 1,014 days
  • Isle of Wight: 1,005 days
  • West Sussex: 973 days
  • Liverpool: 945 days
  • Dorset: 924 days
  • Haringey: 915 days
  • Havering: 898 days
  • Southend-on-Sea: 871 days
  • Worcestershire: 870 days

Source: BBC Research

The longest wait for an individual application was in Suffolk – where it took the council 1,023 days, or nearly three years, to finalise one EHCP application.

Suffolk County Council said an increased demand for EHCPs had proved particularly challenging – happening at the same time as the transfer from the old system of Statements of Special Educational Needs (SEND).

Councillor Gordon Jones, the council’s cabinet member for education and skills, said: “Our priority is to ensure every child gets the correct help and support they need to prosper and develop.

“The increase in demand for education, health and care needs assessments for children and young people in Suffolk is a matter that I am taking very seriously.

“The development of our SEND strategy is driving improvement across SEND and all agencies involved in Suffolk.”

Fifty-two councils told us that they had taken more than a year to finalise an EHC plan for at least one child.

While thousands of families are still waiting longer than 20 weeks for a finalised plan, the data suggests the mean and median waiting times are improving at many councils.

Applications soaring

The number of requests for EHC plans has soared in recent years.

Sixty-one councils provided data on how many applications they had been receiving.

Between them, they were sent 16,696 requests for a needs assessment in 2014-15, but 28,507 in 2017-18 – a 70% increase.

West Sussex County Council told the BBC it had seen a 44% increase in the number of EHC plans it holds over the last four years.

A council spokesman said: “Despite this increase, there has been a year-on-year improvement in us meeting the 20-week deadline for finalising EHCPs and we are committed to continuing this.”

East Sussex County Council told the BBC it had not been given the resources to match.

“The national funding formula has not kept up with the increase in costs councils face as a result of more requests for EHCPs and specialist placements,” the council said.

Challenged at tribunal

The number of parents taking councils to tribunal to challenge them at various stages of the EHCP process nearly doubled over the four years – up from 1,041 in 2014/15, compared with 1,988 in 2017/18.

Fifty-eight councils provided comparable data on these appeals.

Judith from Hastings appealed when East Sussex County Council decided not to assess the needs of her daughter, Hope, who has autism.

“I submitted papers to a tribunal, by myself, I didn’t get any legal help. At that level it’s a paper tribunal, so you’re not ‘in court’ as such. But you still have to get your words in right.

“Very very stressful, lots of research on the internet. For three weeks I spent a couple of hours a night on it.”

In the end, the council conceded to Judith before a tribunal.

“I remember sitting in the car literally in tears, feeling so relieved, but scared, because somebody was coming in to assess my child and that still didn’t guarantee that what they saw would guarantee her an EHCP.”

The BBC found that councils concede roughly four in every 10 appeals before tribunal.

‘Needs more resourcing’

Huw Merriman, MP for Bexhill and Battle, co-chaired a parliamentary group on autism. He praised the “brilliant” research – and said it “requires a justification”.

“I don’t think local education authorities understand how plans work, I don’t think they understand their duties, and I think it needs more resourcing.”

Nadhim Zahawi, Minister for Children and Families, said: “Our ambition for children with special educational needs and disabilities is exactly the same for every other child.

“We are pleased to see that local authorities are improving the speed at which they are assessing SEND children.

“Where a local authority is performing significantly below the national average, we have been working with them through our specialist team of SEN advisers to improve performance.”

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from → council craziness

Vote To Extend Universal Credit To Three Million Claimants Delayed

January 7, 2019
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The next stage of the universal credit rollout is to be scaled back amid concerns about the controversial new benefits system.

MPs were due to vote on whether to move three million benefit claimants onto universal credit in the next few weeks.

But this vote has been pushed back and Parliament will instead be asked to vote on transferring just 10,000 people to the new benefits system.

Labour said ministers should halt the rollout “as a matter of urgency”.

But the government says all claimants will be on universal credit by 2023 as planned.

Universal credit works by merging six different benefits for working age people into one monthly payment.

The single payment is paid directly into claimants’ bank accounts, covering the benefits for which they are eligible.

Supporters of the welfare reform, which is being introduced in stages across the UK, say it helps simplify the old complicated benefits system.

The Department for Work and Pensions has said that, under universal credit people are moving into work faster and staying in work longer.

2.2 million families are expected to gain under the system, with an average increase in income of £41 a week according to analysis by the Resolution Foundation think tank.

However the same analysis found that 3.2 million households could loose an average of £48 per week.

Some people already claiming universal credit say it has forced them into destitution and in some cases prostitution. Others say they have been left to rely on foodbanks.

The rollout has also faced criticism for running over budget and is currently years behind schedule.

More than one million people are currently in receipt of universal credit – either new claimants for benefits or those who have had a change in circumstances, perhaps by moving house.

The government’s plan is for almost seven million people to be on universal credit by 2023.

Ministers were due to seek Parliamentary approval to move three million existing welfare claimants onto the new benefit.

But now Work and Pensions Secretary Amber Rudd will seek approval for just 10,000 people to be moved onto universal credit in the summer.

That process will then be assessed and further Parliamentary approval sought before every other existing welfare claimant is moved.

A source close to Ms Rudd said the pause was the right thing to do, and should reassure Parliament that she was listening to MPs’ concerns.

Prime Minister Theresa May told the BBC’s Andrew Marr Show the new benefits system would be fully rolled out by 2023, as intended.

She said the government was taking its time “to get this right”, insisting that universal credit is a better system than the one it replaces.

She added: “The legacy system we inherited from the Labour Party had nearly 1.4 million people left on benefits for almost a decade.

“Helping people into work, giving them the dignity of being in work, the ability to support their families, that’s what universal credit is about.”

The news that the government was pushing back the vote was first reported in the Observer on Sunday which quoted a Whitehall source as saying Ms Rudd wants a “fresh Parliamentary mandate” for the reform.

Ms Rudd, speaking when she was first given the job of work and pensions secretary in November last year, said she would listen “very carefully” to concerns over universal credit and admitted the system “can be better”.

She added that she would “learn from errors” and “adjust” the system, which she said had problems, where needed.

Labour’s shadow work and pensions secretary Margaret Greenwood described universal credit as “deeply flawed” and called on the government to halt the rollout “as a matter of urgency”.

Former Labour MP Frank Field, work and pensions select committee chairman, told the Observer he welcomed Ms Rudd’s decision to revisit the plans.

He said: “The government seems finally to have woken up to the human catastrophe that was waiting to happen under its ill-formed plans for moving people on to universal credit.”

The government should proceed with “managed migration” of people to universal credit “only once it has proved to parliament that it will not push more vulnerable people to the brink of destitution”, Mr Field added.

The government has agreed on several occasions to slow the pace at which universal credit is extended across the UK.

Ms Rudd’s predecessor, Esther McVey, had promised claimants would be given more time to switch to the new benefit and they would not have to wait as long for their money.

And in the 2018 Autumn Budget last month, Chancellor Philip Hammond pledged an extra £1bn over five years to help those moving to the new payments and a £1,000 increase in the amount people can earn before losing benefits, at a cost of up to £1.7bn a year.

What is universal credit?

Universal credit is a benefit for working-age people.

It replaces six benefits – income support, income-based jobseeker’s allowance, income-related employment and support allowance, housing benefit, child tax credit and working tax credit – and merges them into one payment:

It was designed to make claiming benefits simpler.

A single universal credit payment is paid directly into claimants’ bank accounts to cover the benefits for which they are eligible.

Claimants then have to pay costs such as rent out of their universal credit payment (though there is a provision for people who are in rent arrears or have difficulty managing their money to have their rent paid directly to their landlord).

The latest available figures show that there were 1.4 million universal credit claimants in November.

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from → disability political policies, politics

Beyonce.com Accused Of Breaching Americans With Disabilities Act

January 4, 2019
by

A class action lawsuit claims that Beyoncé’s official website violates the Americans With Disabilities Act (1990) by denying visually impaired users equal access to its products and services, according to the Hollywood Reporter.

Web accessibility requires photos to be coded with alt-text so that screen-readers used by visually impaired users can speak the alternative text. Dan Shaked, attorney for plaintiff Mary Conner, said: “There are many important pictures on beyonce.com that lack a text equivalent … As a result, Plaintiff and blind beyonce.com customers are unable to determine what is on the website, browse the website or investigate and/or make purchases.”

The Guardian has contacted representatives for Beyoncé for comment.

Conner is described in the suit as having “no vision whatsoever”. Shaked describes music as “the one and only form of entertainment that truly presents an even playing field between the visually impaired and the sighted”. Conner’s hopes of attending a Beyoncé concert were restricted by her lack of access to the website, the suit claims.

The complaint lists further issues including the lack of accessible drop-down menus and navigation links, and the inability to navigate using a keyboard instead of a mouse.

The proposed lawsuit includes “all legally blind individuals in the United States who have attempted to access Beyonce.com and as a result have been denied access to the enjoyment of goods and services offered by Beyonce.com, during the relevant statutory period.”

Conner seeks a court injunction that would require Beyoncé’s company to make the site accessible to blind and visually impaired customers in accordance with ADA rules, and is pursuing damages for those who have “been subject to unlawful discrimination”.

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from → technology, the law

Cancer Misdiagnosed As COPD *POSSIBLE TW*

January 4, 2019
by

Spotted on Facebook. We realise that this post may need a trigger warning, however we hope you understand why we feel this deserves to be shared widely.

 

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from → disability political policies, politics

Auticon: The Firm Where All Staff Are Autistic

January 3, 2019
by

Peter, Evan and Brian work at a small technology firm based by the beach in Santa Monica, testing software and fixing bugs.

On first inspection it seems like any other Los Angeles-based company, with tasteful art on the white walls and calm-inducing diffusers dotted about.

Peter describes the working atmosphere as “quiet, but fun”, and especially likes the fact that there is no pressure to socialise, while Evan says of his employers that they are “very accommodating and understanding”. Brian describes his office as “unique”.

Auticon is one of only a handful of companies that cater exclusively for employees who are on the autistic spectrum.

Formerly known as MindSpark before being acquired by German-based Auticon, the firm was founded by Gray Benoist who, as the father of two autistic sons, saw few options in the workplace that could cater for their needs.

“Both are incredibly capable and smart and deserve an opportunity to be able to express that,” he told the BBC on a recent visit to the company.

“I felt that the gap had to be filled and there was no other way to fill it than by taking action myself.”

He started the firm in 2013 and it has now grown to more than 150 employees. His oldest son, also called Gray, now works in the finance team.

“Our mission is about enabling a group who have been disenfranchised. There are many segments of society that are under-utilised and people on the autistic spectrum are one of them,” he said.

Peter had worked in “normal” offices before but they did not seem very normal to him. In fact he compared his previous working life to an episode of Survivors, a BBC series depicting the lives of a group of people in the aftermath of a flu outbreak that has wiped out most of the human race.

“It was all very tricky to navigate and understand. I failed to make social connections,” he told the BBC.

Evan describes how at previous jobs he would “just sit and listen to a podcast by myself while I ate lunch”.

Autism affects more than one in 100 people according to the UK’s National Autistic Society, but fewer than a quarter of these will go on to full-time employment.

Many fall at the first hurdle because anxiety, which can often be heightened for those on the autistic spectrum, makes even the prospect of a job interview very intimidating.

“People tend to hire people who are like themselves, and autistic people are not like you, they are like themselves,” said Steve Silberman, author of Neurotribes, a book which looks at the evolution of autism.

“The list of things you are not supposed to do in an interview is practically a definition of autism. Don’t look away, look the employer in the eye, sell yourself. All of these are very difficult for autistic people.”

Brian desperately wanted to utilise his computing skills in the workplace but felt put off applying for jobs in the competitive tech world.

“There is a lot of pressure. You have to compete against other people,” he said.

Clearly overwhelmed by the prospect, he worked in some menial jobs instead – including in a grocery shop and washing cars – neither of which was utilising his talents and were, in his own words, “not going anywhere”.

Some firms have found ways around the traditional interview process. German software firm SAP, which also employs those on the autistic spectrum, offers candidates the chance to build Lego robots instead of a formal interview.

“That shows problem-solving skills and commitment to a task,” said Mr Silberman.

And SAP obviously thinks it is worth it, pointing out that employing autistic people is not done out of “charity” but because it “boosts our bottom line”.

As well as having heightened anxiety, autistic people often struggle with social interaction.

So, at Auticon, if employees want headphones because of noise sensitivity they can have them. They also have the option to work in a dark room if they prefer, they don’t have to take lunch breaks if they do not want them and if they do not feel able to communicate verbally with their team-mates, they can use messaging apps instead.

If things get too much for someone, they are entitled to “anxiety days off”.

“Sensitivity to our employees’ issues is our first priority,” said Mr Benoist, “but that means putting the processes behind that to ensure you still deliver the highest quality to your client, which requires thought about how projects are put together and how resources are assigned.”

And when it comes to the dreaded employee review, there is an emphasis on not being critical.

“It is all about good human resources principles, it is something that other firms could easily replicate,” he added.

Mr Silberman is not convinced that segregated offices are a good idea because he thinks that both autistic employees and their more neuro-typical co-workers can learn a lot from working together.

“By learning how to manage neuro-diverse employees, employers also learn how to help every employee,” he said.

“Look at Bill Gates, who definitely had autistic traits. He has grown socially and is now a great philanthropist.”

There is a four-week training schedule at Auticon which decides whether candidates are suitable for longer-term employment.

Some do not make the grade, especially those who are pushed by their parents to apply for a job despite having no passion for coding, and it is important to point out that there are lots of autistic people whose interests lie elsewhere.

For those who are successful at Auticon, the team appear to be hugely supportive of each other even if they don’t all go out for lunch together.

When new office space was designed recently, employees asked for it to be open-plan rather than closed cubicles.

“It’s great. Easy-going, patient and really accepting,” said Peter. “And everyone is very funny.”

Brian and Evan both now enjoy lunch breaks with their co-workers, although Peter still finds it “hard to pull myself away from work”.

But, perhaps tellingly, all three regard Auticon as a job for life.

That is a lesson that other companies should take note of, thinks Mr Silberman.

“For many autistic people, if they find a place where they feel supported and feel their skills can thrive they became very devoted and loyal and don’t move on. And that saves companies money because they don’t have to retrain people.”

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from → international, progress

Diabulimia: I’ve Got My Life And My Feet

January 3, 2019
by

“I’ve got my life and I’ve got my feet. They’re two of the biggest things for me considering what damage I could’ve done to myself.”

Becky Rudkin has diabulimia – a term used to describe those with type 1 diabetes who deliberately take too little insulin to try and control their weight.

It isn’t a medically recognised condition but a £1.2m grant has just been awarded to fund research into it.

It’s hoped scientists will be able to come up with an effective treatment plan for people with diabulimia.

Becky, 30, from Aberdeen, featured in the 2017 Newsbeat and BBC Three documentary Diabulimia: The World’s Most Dangerous Eating Disorder.

Back then she revealed that because she wasn’t taking enough insulin, the bones in her feet had disintegrated into what doctors described as “honeycomb and mush”.

Becky had to use crutches because of the damage done to her feet and spent three years in and out of an eating disorder clinic.

In the most serious cases, diabulimia can result in heart failure, loss of limbs and even death.

A year on from the documentary, Becky tells Radio 1 Newsbeat “things have kind of picked up” for her.

She no longer has to use crutches or see her mental health team and says she’s excited for her future.

“I’m engaged to be married, my partner’s moved in and we’ve got ourselves a little dog.

“She’s my baby right now and that’s helped a lot, pets do that, she gives great cuddles.”

The funding for research into diabulimia has been secured by clinician scientist Marietta Stadler, who works at King’s College Hospital in London.

She and her team will use the money to try and better understand diabulimia and will carry out interviews with people who have the condition.

“You can’t have a bunch of doctors deciding on an intervention, you have to have the people who’ve lived with the condition involved,” she says.

The research is expected to take five years and the current plan is to come up with a 12 module treatment plan – a session every fortnight for six months – for patients with diabulimia.

Becky says it’s “about time because diabetes is overlooked” but she also has concerns.

“Everybody’s different and we all treat our diabulimia and diabetes completely differently to each other. So I suppose that’s where it could be a sticky bit.

“What can you do in 12 sessions with someone who has diabulimia? It’s just scratching the surface – a fortnightly meet up – I just don’t know if that’s enough.”

The funding has been granted by the National Institute for Health Research (NIHR) – which decides to award money to research projects which it says have a “clear benefit to patients and the public”.

It told Newsbeat: “Everything we fund should have a worthwhile and real effect in the NHS and Marietta’s research was a great example of this.”

NHS England says it is continuing to join up psychological and physical health services which includes placing 3,000 new mental health therapists in GP surgeries.

“Closer working between diabetes and mental health care is just another part of the jigsaw – with more work planned as part of the long term for the NHS.”

Marietta says the research is just the “first step” and after five years of funding a bigger trial would be necessary before any formal treatment plan was adopted into the NHS.

A Scottish Government spokesperson said: “Like everyone, people diagnosed with Type 1 diabetes don’t just have physical health needs, they have mental health needs too.

“Our ambitious 10-year Mental Health Strategy, backed by investment of £150 million over the next five years, sets out clearly how we can improve early intervention, and ensure better access to services, including specific actions to support people with eating disorders.”

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from → updates

Claimant With MS Has PIP Halved- Because He Can Touch His Nose

January 3, 2019
by
On the odd day, Paul Powell can get out of bed and walk to the bathroom, though he’ll be wobbly on his feet. But he spends the majority of his time in bed with fatigue and no strength.
Indeed multiple sclerosis (MS) – which the 50-year-old has suffered with for more than 20 years – is known as a disease of ‘good days’ and ‘bad days’.
For some with more progressive types, it’s ‘bad days’ and ‘not-as-bad’ days which is the case for Paul.

But after an assessor came to visit him over his claim for Personal Independence Payments (PIP), his mobility car was taken off him – which left him virtually housebound in a remote village with no public transport links.
His disability benefit income was more than halved too – money he relied on to heat his house.

“Paul’s MS is terrible in the cold and he really goes downhill in the winter,” his wife Glenice told i. “His legs just give way.
“His money went from £468 a month to £229. I’m not working because I’m his full-time carer so it’s had a huge financial strain on us.”
‘We’ve had to cut back on everything’
MS is a disease of the central nervous system where the body’s immune system mistakenly attacks the insulation around nerve cells (myelin) in the brain, spinal cord and optic nerves. More than 100,000 people in the UK have the condition. Paul was diagnosed with the relapse remitting form – when people have distinct attacks of symptoms which then fade away either partially or completely – aged 30 when his ankle went weak and he lost his eyesight.
After eight years, his symptoms worsened and he developed the secondary progressive form, when a person no longer has relapses then gets better, and their disability gets steadily worse.
It forced him to give up his job as a painter and decorator.
“Paul has severe backache and is never not in pain,” said Glenice. “He also has a shadow on his brain which causes very bad headaches. He spends much of the day in darkness as bright lights affect his eyes. He finds it difficult to talk to people as he gets very confused and tongue-tied.”
He was awarded a lifetime award for Disability Living Allowance (DLA), with high rate mobility and middle rate care, as well as a Motability car, until the benefit ended and he was switched to PIP last year.
He and his wife – who was then suffering from lung cancer – were astonished that he had lost the higher rate mobility and care.
“Paul isn’t able to walk very far and uses a walking stick or sometimes a wheelchair.
“At the time we were living in a very isolated village, and the car was a lifeline for us. We use it to get to regular doctor and hospital appointments. We have moved now but we’re still not on a public transport route.
“We’ve had to cut back on everything. We used my life savings to buy a new car and that’s completely drained us.
“Other than medical appointments we rarely go out. We feel really isolated, but we can’t afford the petrol to go out.” 
‘Unfair’ assessment
Glenice, 60, from Much Dewchurch, Herefordshire, said the assessor had no idea what life is like for people with MS. “They sent a psychiatric nurse and I don’t think he understood that the disease caused good days and bad days, or bad days and not-as-bad days as the case is for Paul,” she said.
“He came to our home and asked questions for an hour and a half. Paul was in bed that day, not feeling well at all. 
“He was asked to walk to the bathroom, stand on one foot and touch his nose with his finger. He managed to do all of it, but he was very unstable on his feet. He was asked to put his socks on and I had to help with that.
“It does feel like just because he could touch his nose with his finger that day he had his benefits halved. Other days he can’t do all these things at all.
“I challenged this decision but the Department for Work and Pensions (DWP) said they were satisfied with the assessor and that Paul didn’t have enough points to qualify for PIP.
“You’re made to feel like you’re a fraud. It makes me angry because Paul didn’t choose to have MS. He would rather be working than lying in bed all day feeling ill.”
Loss of thousands
When the Powells moved house last summer they moved into an area where Universal Credit had been rolled out, which meant Paul had to switch to this from Employment and Support Allowance.
“Paul has been made to sign on at the Job Centre every two weeks and they’re asking him how many hours he’s available for work which is ridiculous. He hasn’t been able to for 12 years.
“We’ve now been waiting for an answer for four months over whether they deem him fit to work. It’s very stressful.”
The couple took their case to tribunal, and last week just found out that the DWP has agreed to reverse its decision over Paul’s PIP. But they have only got back-dated pay from May this year when they lodged their appeal.
“We are pleased but it’s been a real battle and a lot of stress to get what Paul should have been entitled to in the first place,” said Glenice. “And we are not getting back-dated pay for the three years when his benefits were halved – that comes to over £8,000.”
The DWP spokesperson said: “We introduced PIP to replace the outdated DLA system. Under PIP 52 per cent of people with MS receive the highest possible award, compared with 39 per cent under the previous benefit DLA. Since PIP was introduced there have been 3.7 million decisions and of these, 5 per cent have been overturned. Where decisions are overturned, often further evidence has been provided.
“We work closely with organisations such as the MS Society to ensure that PIP is working in the best way possible, and we recently announced that people with the most severe, life-long conditions will no longer have to attend regular reviews for PIP.”

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from → disability political policies, politics

The 12 Hot Topics Of 2018: Disability

January 3, 2019
by

In a round-up of the 12 hot topics of 2018, the Guardian recently included this section on disability:

The British and Kenyan governments co-hosted the world’s first global disability summit, designed to highlighted the lack of funding to support people with disabilities and to end discrimination.

People with disabilities continue to face stigma. The photographer Kate Holt witnessed the struggles people face when she visited Kenya. She met Deborah Mmonga from DRC, who has been disabled from the age of nine, and fled the fighting with her five nieces and nephews after her sister died. We also highlighted claims of abuse of children with disabilities in orphanages, where they are sent to escape violence at home.

But amid the hardships came stories of hope. In Burkino Faso, Wendabo, a 12-year-old girl born with a rare genetic condition that affects limb development, spoke about defying the odds to go to school.

On Global development’s Small Changes podcast, launched this year, we heard from Eddie Ndopu, who was diagnosed with spinal muscular atrophy when he was two and went on to become the first African with a disability to graduate from Oxford University. He’s now a global ambassador for humanity and inclusion. We also heard from Christophe Oulé, who rebuilt his life after he lost his sight.

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from → international

Dr Hook’s Ray Sawyer Died Yesterday Aged 81

January 2, 2019
by

Ray Sawyer – the eye-patch wearing singer with Dr Hook & the Medicine Show in the 1970s – has died, aged 81.

His wife Linda said Sawyer died “peacefully in his sleep“, adding that her “heart is broken.”

The band is best known for the song When You’re in Love with a Beautiful Woman, which was a number one hit in the UK in 1979.

Sawyer joined Dr Hook in 1969, two years after he lost an eye in a car accident.

Despite not being the lead singer, his eye patch – and cowboy hat – meant he was the most easily recognised.

But Sawyer, who was born in Chickasaw, Alabama, in 1937, did take lead vocals on one early hit, 1972’s Cover of the Rolling Stone.

In the song’s lyrics, he sang: “The biggest thrill we’ve never known is the thrill that’ll getcha when you get your picture on the cover of the Rolling Stone.”

Dr Hook did eventually appear – in caricature – on the front of the famous magazine in 1973.

“Here was this little band from Alabama standing on the corner saying, ‘Hey, put us on the cover’, and it worked,” he later said, according to Ultimate Classic Rock.

“It was a dream come true.”

The band’s other hits included Sylvia’s Mother.

Sawyer left the band in 1981 to pursue a solo career, but went on to spend much of his later career touring with a spin-off group named Dr Hook featuring Ray Sawyer.

He retired just three years ago.

Dennis Locorriere, who was one of the founders of Dr Hook with Sawyer, said in a statement to Rolling Stone magazine that though they had not spoken for years “it does not erase the fact that we were once close friends and shared an important time in both our lives”.

“Deep condolences go out to his family at what must be a difficult time.”

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from → Famously DisAbled, tributes

Councils Failing To Take Action Against Blue Badge Misuse

January 2, 2019
by

A disability charity says it is “disgraceful” councils are failing to take action against people misusing blue-badge parking permits.

Analysis by the Press Association found 94 out of 152 (62%) local authorities in England did not pursue anyone for abusing the scheme in 2017-18.

Phil Talbot, from charity Scope, said thefts of disabled permits were rising.

The Local Government Association said councils had to take “tough decisions” on enforcement with limited resources.

Mr Talbot added: “Stealing blue badges isn’t a crime without consequences. They are a vital lifeline for those who genuinely need them.”

The analysis of the Department of Transport data showed the number of blue badges reported stolen totalled 4,246.

Zero prosecutions

It found 31 councils did not catch anyone despite claiming to have a policy for prosecuting offenders.

Local authorities in Nottingham, Middlesbrough, Shropshire, Luton, Milton Keynes, Bournemouth and Reading were among those to record zero prosecutions.

Martin Tett, transport spokesman for the Local Government Association, said gathering evidence and mounting a prosecution could be “time-consuming and expensive”.

About 2.4 million disabled people in England have blue badges, which are issued by councils.

Almost every case involving the 1,215 prosecutions across the country involved drivers using someone else’s blue badge.

The permits allow holders to park for free in pay and display bays and for up to three hours on yellow lines, except for where there are restrictions. Holders in London are exempt from the congestion charge.

The largest number of prosecutions were made by the London boroughs of Hammersmith and Fulham (137) and Newham (88), with Leeds (78) in third place.

Mr Tett claimed the disparity in enforcement levels across England was likely to reflect “different levels of pressures on available parking”.

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from → council craziness

Anthony Ford-Shubrook OBE

January 2, 2019
by

Every time an Honours list is published, Same Difference searches it for disabled people.

This year’s New Year’s Honours was no exception, except that we didn’t have to look very far.

Anthony Ford-Shubrook, a personal friend of our editor, has recently been made an OBE for services to children with disabilities in Africa.

Anthony, 32, is a Trustee of the Alliance For Inclusive Education (ALLFIE) and the Youth Ambassador for AbleChildAfrica, a UK-based charity supported by the Department for International Development.

He described his OBE as “A big surprise!”

Speaking about his work with AbleChildAfrica, Anthony said “I have recently returned from Kenya and Rwanda where I was involved in projects that support getting children with disabilities into education.”

He added  “In 2016 I was selected as one of the 17 inaugural Young Leaders for the United Nations Sustainable Development Goals. 18,000 candidates worldwide were put forward for outstanding work in various areas. I was the only delegate selected from Europe and the only delegate with a disability.”

Asked what he hoped the OBE will mean for him, Anthony, modestly, wanted nothing for himself but said instead: “I very much hope that this OBE award will benefit AbleChildAfrica and support its work.”

He credited the support he has received from his parents, and his own education, as “a major part of my achieving this award.”

When asked about the possibility of a Knighthood he simply said “Maybe one day!”

Same Difference wishes Anthony the very best in whatever comes next for him professionally. We are truly proud to call him a friend of the site.

 

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from → interviews

Zero: A Review

January 2, 2019
by

After the disappointment of 2018’s AndhaDhun, in which a blind pianist is revealed to be faking his disability, Zero has restored my faith and pride in Bollywood’s ability to represent disability positively.

Shah Rukh Khan is brilliant as Bauua Singh, a man of restricted growth with more than enough of everything else! His search for a wife leads him to Anushka Sharma’s Aafia, a space scientist with Cerebral Palsy- the disability I have had since birth.

They fall in love, sing a beautiful song, and yes, even have sex. However, on the day of their wedding, Bauua runs away to participate in a competition to meet a movie star, Babita, played by Katrina Kaif.

When he eventually realises that he truly loves Aafia, he finds her, and his baby daughter, in New York, where she is training human volunteers for a voyage to Mars. Over another beautiful song and several months of training, he tries, unsuccessfully, to win her back.

He proves his love by going to Mars when he is selected, returning 15 years later.

Many may find the space science side of this movie unrealistic. I found it fascinating.

Many South Asian audiences may find it difficult to believe that two disabled people can fall in love and do everything that other couples do. As a woman with Cerebral Palsy, I instantly loved the characters. I know exactly how intelligent and capable disabled people are and in Aafia, I saw a version of myself. I would have loved her character in a Hollywood movie, too, but for Bollywood to represent disability in this way felt somehow more special.

Bauua has his faults, but who doesn’t? They are exactly what makes him a ‘normal’ man.

Zero picks up right where 2017’s Kaabil left off- proving that disabled people are capable of anything. Maybe South Asian audiences don’t yet accept this fact, meaning that Zero might not be a smash hit, but in my eyes, everyone involved in this movie scores 100%.

I sincerely thank the cast and crew, and I sincerely hope for many more positive representations of disability in future Bollywood movies. I ask Bollywood to remember its great influence over worldwide audiences, and to remember the great power that fiction has to change opinions and attitudes to all kinds of differences and social issues.

 

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from → Fun Stuff, reviews

Same Difference: Successes Of 2018

January 1, 2019
by

Readers, 2018 was not the best year that Same Difference has ever had. Our hit counts were low, but we recognise that this was because we published much less content than we would have liked to.

However, in 2018, we did have three very special successes. So this year, rather than our usual poetic review, we decided to remind you of those.

First, in March, we exposed YouGov’s question about benefit claimants voting. 

This was picked up on Twitter and by the Canary and led to YouGov changing the question.

Then, in June, we published our 10,000th post.  This was a special milestone for our editor, one that she never thought we would reach. It brought her a lot of joy when we did!

Finally, in July, a very generous friend of Same Difference had a wheelchair accessible car to give away. Our editor was proud to publicise this very special gift and was thrilled to see the car find a good home with one of our readers, who wrote a wonderful guest post for us about the experience of receiving it.

Readers, we begin 2019 on this New Years Day with this review and with a promise that we will do our very best to make this year bigger and better than the last for Same Difference.

We wish you all the very best of health and lots of happiness for 2019 and hope that you continue to find Same Difference useful and interesting this year and for many years to come.

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from → general

Kimberley Chard

December 21, 2018
by

An artist with cystic fibrosis who uses painting to help her live with the condition has been holding an exhibition of her work.

Kimberly Chard, from Bargoed, Caerphilly county, underwent a lifesaving double lung transplant three years ago.

Her body is now rejecting her new lungs.

But the 35-year-old said she wants to make the best of the time she has remaining and wants her art to be her legacy.

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from → Fun Stuff

MPs Want UC Put On Hold To Protect Disabled Claimants

December 20, 2018
by

A cross-party group of MPs has called for the next phase of universal credit to be put on hold until ministers can show that disabled claimants will be properly protected from the potentially disastrous consequences of moving to the new system.

The Commons work and pensions committee says there are insufficient safeguards for claimants who will be worse off financially when approximately a million disabled people on employment and support allowance (ESA) move on to universal credit over three years from 2020.

This would potentially leave some of the social security system’s most vulnerable claimants isolated, destitute and in some cases relying on their dependent children for care, the committee says in a report.

It says the government should not seek parliamentary approval for regulations covering the “managed migration” of about 3 million claimants on ESA and working tax credits to the new system, but should wait until lessons can be learned from a pilot scheme starting next year covering 10,000 claimants.

The report highlights the removal from universal credit of disability premiums that are worth up to £64 a week for a single person. The premiums are designed to meet the extra costs of living alone without a carer. Approximately 500,000 people in the UK receive the severe disability premium, enhanced disability premium or both.

Earlier this year the government announced it would provide transitional protection for recipients of the premiums after a court case brought on behalf of two disabled men revealed they were unable to afford basic needs after they moved on to universal credit and found themselves £178 a month worse off.

The committee says the government made a “serious error” in removing disability premiums from universal credit in the first place. While it had since introduced protections, these could still be lost if claimant circumstances change, and will not apply to new claimants.

“Removing vital additional support offered by the disability premiums from universal credit risks disabled people living more isolated lives, relying on unpaid care (including from their own dependent children) or simply being unable to complete certain basic daily tasks,” the report says.

It calls on the government to consider introducing a new “self care” payment into universal credit for all claimants who would have received the disability premiums.

Although the Department for Work and Pensions (DWP) has pledged that “severely disabled” claimants will be better off under the new system, the committee says this will come at the expense of those claimants judged to be “less severely disabled”.

The committee also says that currently 100,000 families with disabled children will be worse off. It says officials have no clear idea what the impact will be on families facing a financial shortfall, or the knock on effects on local care services.

Frank Field MP, the chair of the committee, said: “The government’s plans will see ‘very’ disabled people getting the extra help they need at the cost of other disabled people. We have already seen the terrible cost of the department’s failure to find out what is happening to the most vulnerable claimants in the transition to universal credit.

“People receiving the disability premiums are already, by definition, managing in some of the most difficult circumstances imaginable in our society, and this includes disabled children, and children forced to care for a disabled parent. It would be a terrible betrayal of these people to allow another failure of planning in this mega reform to worsen their situations, even one bit.”

The report echoes fears of campaigners who have warned that the managed migration to universal credit could see disabled and ill people falling though the net. That warning was repeated by the government’s own advisers, the social security advisory committee, in October, which led to ministers last month promising to make changes.

A DWP spokesperson said: “More than a million disabled people will be better off by £100 a month under universal credit and £3bn of funding will help protect families as they move over from the old system.

“Universal credit does work for the vast majority, and the managed migration regulations are set to be debated in parliament in due course.”

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from → disability political policies, politics

Wheelchair Dance Club- Freewheelin

December 19, 2018
by

A dance club for wheelchair users helped a bride achieve her ambition of enjoying the first dance on her wedding night.

Kirsty Capella, 27, from Birmingham, joined FreeWheelin ahead of her marriage to new husband Adam.

FreeWheelin provides dance sessions for wheelchair users and offers them a path into competition dance.

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from → Fun Stuff

Rain Man At 30: A Blessing Or A Curse?

December 18, 2018
by

After Rain Man was released on 16 December 1988, the whole world knew what “autistic savant” meant. Despite spending years in development hell, and test screenings fostering tepid and confused responses, Rain Man was a runaway success. It swept the Oscars, winning best picture, best original screenplay, best director and best actor for Dustin Hoffman’s portrayal of Raymond Babbitt.

Rain Man’s influence on how autism is thought of culturally is incalculable. But an influence, however benign or well-intentioned, can become suffocating if allowed to flourish for too long. What was once liberating can become irritating and constricting: so 30 years after the film’s release, was it a blessing or a curse for the autistic community?

Before Rain Man, there was no popular conception of what autism looked like, among the public or on-screen. At that point autism was an abstraction, understood only by dedicated parents or specialised clinicians. In Rain Man, this widespread ignorance is exemplified by the moment when Charlie Babbitt (played by Tom Cruise) attempts to consult a psychiatrist about Raymond, his brother. A nurse asks, “He’s artistic?” Charlie replies, “No, he’s autistic.” The nurse says, “I’m not familiar with that, what is the exact nature of the problem?”

Autistic people’s only advocates were their parents, and even this situation was far from a given. Autistic people were often institutionalised. Groups of parents fighting for their children’s rights and freedoms had been working in the dark for decades. Then, suddenly, everyone around them knew the word that had previously been theirs and theirs alone – autism. Suddenly everyone knew Raymond Babbitt, and Babbitt quickly became a cultural shorthand for autism.

Rain Man remains Hollywood’s only runaway success with an autistic character. In the 30 years since its release, no film or TV show involving an autistic character has matched the commercial and critical success of Rain Man, and this has allowed it to attain a unique kind of cultural staying power. Media is immensely powerful, and films penetrate our cultural consciousness more potently than any other art form. Many people’s conception of psychiatric wards comes from One Flew Over the Cuckoo’s Nest, and many people’s conception of autism comes from Rain Man. Rather than being viewed as a single iteration of autism, Raymond Babbitt became autism.

The film has become such a shorthand, that I and every autistic person I know immediately has to caveat the statement “I’m autistic” with “I’m not Rain Man”. Autistic people are frequently met with the same question that a doctor asks Raymond in the film: “Does he have any special abilities?” Rain Man was also the birthplace of what has now become a common trope of autistic portrayals in film and TV: autistic savants. The most recent incarnation of this is Shaun Murphy, played by Freddie Highmore, in The Good Doctor. The idea that all autistic people are geniuses, or that they all have savant abilities such as extraordinary memory, is a myth, a myth that is largely alive and kicking today due to Rain Man. Yet the cultural stereotype of Raymond Babbitt, the autistic savant, persists.

But Rain Man’s ubiquity and its influence is hardly the film’s fault. The blame lies with the wider industry. Rain Man should have been a cultural beginning for autistic characters on screen. Instead it became a singular event, an end point. And while there have been some notable exceptions (such as Max, voiced by Philip Seymour Hoffman, in Adam Elliot’s brilliant film, Mary & Max) autistic characters have shown no signs of straying from the Babbitt formula.

As a beginning for autism on screen, Rain Man deserves applause. It gave autistic people a visibility that had previously been denied them. In one fell swoop Rain Man achieved almost overnight the kind of representation that parent advocacy groups had been working towards for decades. But as the dominant depiction of autism on screen, it also deserves derision. The autistic community is more than Raymond Babbitt. While this wasn’t apparent in 1988, it is clear now, and yet, 30 years on, Rain Man’s enormous influence on autistic characters on screen shows no sign of abating. Rain Man continues to affect autistic lives, whether we like it or not.

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from → DisAbility on Screen, Fun Stuff

Support Group, Told Not To Attend WCA, Still Lost ESA Without Warning

December 18, 2018
by

This was left in our comments section last night. We are keeping the reader who posted it anonymous, so there is no link. We feel the story deserves to be shared widely.

 

I was on ESA in support group, called for WCA sept 2018 but invite came with a letter saying if you cant climb 82 steps in an emergency dont go. I didnt and both phoned and wrote explaining why i couldnt climb 82 steps in an emergency or otherwise and requested and alternative venue. This was excepted by the decision maker as having good cause and a new appointment was sent for 3rd october in exactly the same place still on 4th floor. Didnt go to second appt for the exact same reasons, mobility issues, and ESA was stopped. No one bothered to tell me only found out when HMRC sent P45 that stated benefit ceased 3rd oct. Three times i have requested an MR,, still have heard nothing and its now 18th December 2018, left penniless and destitute, council tax stopped 2000 pound mortgage arrears , no gas so not heating or hot water and no money for food for me or the kids, so yeah merry christmas DWP.

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from → disability political policies, mainstream madness, politics

Rudd Urged To Pause Sanctioning Over Christmas

December 17, 2018
by

An MP has urged the work and pensions secretary, Amber Rudd, to make the benefits system more humane over Christmas by reinstating a long-standing £10 extra payout and returning to a previous pause on sanctioning claimants over the festive period.

The SNP’s Hannah Bardell said Rudd, who pledged last week to make sure the social security system helped people when they most needed it, should act on her words and do the “decent and right thing”.

In a letter to Rudd, she highlighted the decision to partially scrap the £10 Christmas “bonus”, in place since 1972 for many people on benefits. It will not be paid to those receiving universal credit, the new, combined system for working and unemployment payments.

While the sum was small, Bardell wrote – it has been unchanged since 1972 – it was “the difference between some people eating and not”.

She also demanded a reinstatement of a traditional pause over the festive period of sanctioning claimants, in which their payments are docked or stopped as punishment for alleged failures to comply with jobcentre rules.

The Department for Work and Pensions (DWP) has told Bardell this has not been a national policy since 2010, but she wrote that a senior department official had told her it had only been scrapped in 2014.

Bardell told the Guardian the official told her that when the policy was first ended, her office “had to send members of staff home on Christmas Eve very, very distressed because they’d had to sanction people over the Christmas and new year period, and the people they were sanctioning were massively distressed”.

Bardell said: “It caused a huge amount of upset among staff, and really damaged morale.”

Reports have concluded that the sanctions system is ineffective in getting jobless people into work, and tends to have disastrous effects on people’s welfare.

In the letter, Bardell said Christmas was a difficult time anyway for people in poverty. She wrote: “It is completely and utterly morally unjustifiable and totally heartless to cut people’s benefits at Christmas time.”

Rudd sent an open letter to her fellow Conservative MPs last week, promising to take a new approach in her job, which she began in November.

Rudd said she wanted a benefits system “that gets help to people when they most need it, represents the best of British values and has women and children at its heart”.

Bardell said the decision to push ahead with ending the £10 payments and sanctioning claimants over Christmas was completely contradictory to this stated intent.

“At the very least, having a pause around Christmas is the decent and right thing to do,” she said. “It’s not a huge ask. It’s not going to cost them any money. It’s just the right thing to do. People will still be sanctioned in the new year.

“But at a time when there’s so much uncertainty over Brexit and so much damage done by the benefits system, if she really wants to live by the mantra she’s trying to set out, this would be a really positive, decent that she could thing. It’s about deeds, not words.”

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from → disability political policies, politics

Bleed Out

December 17, 2018
by

In 2009, Steve Burrows’ mom, Judie, went in for hip replacement surgery. She came out with brain damage and mobility issues after a weeks-long coma that would change her and her family’s life.

In the new HBO documentary Bleed Out — Burrows, a filmmaker and comedian, tracks his 10-year odyssey to find out what happened to his mother and who is to blame. It’s a deep dark dive into the heart of America’s health care system.

What happened to Judie is complicated, but it essentially began with massive blood loss.

“In the end, that’s really how this whole thing started,” Burrows says in an interview with NPR’s Lulu Garcia-Navarro. “She lost over half the blood in her body.”

After her surgery, she was put into recovery and left alone with that’s called an electronic intensive care unit, or eICU.

With a series of monitoring tools that usually include microphones, video cameras and alarms, eICUs are meant to provide the 24-hour monitoring that many patients require after a major medical emergency.

“This [eICU] didn’t notice my mom was in a coma for at least a day and a half and I wanted to talk to the ICU doctor who was there that night,” Burrows says. “We were told there was no doctor there. I said ‘Well that’s insane, what do you mean?’ “

He says there were doctors monitoring the cameras out by the airport in Milwaukee and they were supposed to be the safety net for his mother.

Burrows says that when he asked whether the camera was on, the head of the ICU told him it wasn’t because of patient privacy issues.

As Burrows dug into his mother’s case and the failure of the eICU to recognize her coma, he came across a staggering statistic. According to a study by researchers at Johns Hopkins University, the third leading cause of death in the United States is medical errors.

YouTube

And those errors, Burrows says, can leave patients one step away from financial ruin.

“That’s the hard lesson we learned,” Burrows says. “My mom, certainly. She was a single mom, she raised my sister and I. She did everything right. She was set. And this happened and two and half years later, she’s broke. She’s on Medicaid … and now we, all the American taxpayers, are paying for her.”

Burrows says that before her surgery, Judie was a vibrant, independent and adventurous woman. These days, her health care has become increasingly more complicated, and in the past two months, she has started long-term hospice care.

“She is very compromised,” Burrows says. “She lost her speech several years ago and that was really the thing that really hurt her the most because she was so articulate and so full of life. I know that the loss of her speech is really the thing that is really killing her the most.”

Throughout the 10 years that Burrows documented his mother’s struggles, he recorded many conversations — both openly and secretly. One of those conversations was with the doctor who conducted his mom’s hip replacement surgery. At the time, the doctor didn’t know he was being recorded.

Steve: If you were in my shoes, right now, what would be …

Doctor: I’d like an accounting, just like you, for why in the hell no doctor was there. Their intensive care unit, where this problem occurred, we still don’t know what happened. We don’t have accountability.

Steve: I mean, do you think they’ll ever tell the truth?

Doctor: No. I don’t.

Up until this point, Burrows had been asking basic questions to the doctors and caregivers involved in his mom’s situation and their stories were always changing, he says. When he finally heard what he thought was the truth by the doctor, Burrows says it was shocking.

He started filming his mother’s pain and suffering after consulting with attorneys about trying to pursue justice for her. She was at her most vulnerable. It was painful and uncomfortable, but he knew he had to do it.

At the time, he didn’t want to make a documentary, but he eventually decided others needed to know what happened.

“When I started to find out about this universal thing, about the third leading cause of death, and then the eICUs, I thought I really have to tell people about what I just found out,” Burrows says. “Because I’m a pretty informed guy and I didn’t know about any of this stuff.”

Although he’s done his best to make sure his mother is comfortable, Burrows says he hasn’t been able to give her what she really wanted, which was to get her life back.

“I had a great mom and I really tried hard to give her everything she wanted and I couldn’t give her any of that,” he says. “She wanted to go home. She wanted to drive. She wanted her life back.”

Burrows says he hopes that as people watch the film, they realize they need to ask thoughtful questions when it comes to their health care, and he stressed the importance of having a patient advocate in case things like this happen.

“You need to shop for doctors and hospitals like you’d shop for a car,” he says. “You know, shop like your life depends on it because we found out that it does.”

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from → mainstream madness

Gaelynn Lea

December 17, 2018
by

Six weeks before her wedding Gaelynn Lea was dangerously ill in hospital after complications from surgery. She had to persuade the doctors to let her fiance stay overnight, since they weren’t technically married. “And every night he was asleep in this little chair by the bed. Going through this intense experience confirmed a lot of things for me: that he was as good a guy as I could have found. And that you make it through together.”

Lea recovered and the wedding went ahead. A year later, working as a full-time music teacher in her home town of Duluth, Minnesota, and doing regular solo fiddle shows, she decided to write a song inspired by that time. “Side by side,” she wrote, “we face the night.” The result was Someday We’ll Linger in the Sun – a haunting melody that won NPR’s prestigious Tiny Desk song contest, beating more than 6,000 other entries.

Almost overnight Lea went from being a part-time performer to a touring artist. “The prize was to do four gigging trips around the country and after the first one Paul [Lea’s husband and now tour manager] was saying, ‘That was so fun!’ And I said, ‘Can you see yourself doing this full-time?’”

The 34-year-old’s schedule has been busy for the two years since she won Tiny Desk. This month, she is in the UK and Ireland, where her Celtic-inspired music has found an enthusiastic audience. “I have a song called Birdsong that has a singalong part, and the last time I played it in Ireland I finished playing and the audience kept going,” she says with a laugh. “They wouldn’t stop singing!”

Using a looping pedal to create rich, layered accompaniment, Lea’s act explores the gamut of emotions, from love and forgiveness to her fight for disability rights. Lea was born with osteogenesis imperfecta, also known as brittle bone disease. Her bones broke more than 40 times while she was still in the womb; her arms and legs are bent and she uses an electric wheelchair to get around.

She wrote the protest song I Wait as President Trump attempted to dismantle the Affordable Healthcare Act, which could have left those with pre-existing conditions such as Lea unable to get medical care. Lea’s lyrics – “Can you see me, way in the back here?” – are a heartfelt rallying cry for disability rights to be taken seriously throughout the world.

Her own experiences with healthcare have made her a powerful advocate. In her 20s, she suffered a respiratory attack and one doctor told her mother there was nothing to be done for her. “So she got a second opinion. And they gave me the most basic medicine you’d give anyone with those symptoms and recovered right away. The first doctor just took a look at me and thought she’s different and wrote me off.”

Duluth, a pretty town of only 90,000 inhabitants on the shores of Lake Superior, is famed for its cold winters – there’s snow on the ground from November to May – but it is also an artsy place with a surprisingly large music scene. Lea’s parents, a maths teacher and a college secretary, both loved performing: they met while putting on a production of Brigadoon.

For two decades her parents ran a dinner theatre specialising in musicals and comedies. “I grew up at that theatre,” says Lea. “They’d bring mats to rehearsals, and my younger brother and I would sleep till they were finished.” Lea has two more siblings at home, and there was never any question of being left out. “One time they wanted to take a bike ride, so they tied me to the back of my brother’s newspaper rack with twine,” she recalls. “Because we thought that was the safest way to do it!”

When she was 10, an orchestra came to play at Lea’s school, and she told her mother that she wanted to play violin. “She said, ‘If you really want to I’m sure you’ll figure it out’,” says Lea. But it was a supportive music teacher who helped her find her own way around the instrument. “She could have easily said, ‘I don’t know how to help you, you’re just going to have to sing in the choir.’ But we experimented until I found something that worked.

“So I play my violin like a cello and I hold my bow like a bass player. I didn’t realise how big a deal that encouragement was until I started meeting other people with disabilities who had been discouraged from playing. That really breaks my heart.”

At college, Lea discovered folk music, and later one of Duluth’s local legends, Alan Sparhawk of Low, introduced her to using a looping pedal. “He said, ‘You should learn, because someday you’ll play shows by yourself.’ And I said, ‘Haha, yeah right.’”

https://open.spotify.com/embed/album/5QzsW1lCd8KkdBWYyUSWc9

Her album, Learning How to Stay,which she recorded with a full band, ends with Moments of Bliss, a song that takes a hard look at the reality of long-term relationships. Lea was 22 when she met Paul; she had always feared that her disability would prevent anyone finding her beautiful. When a friend introduced them at an open mic night, they bonded over their love of camping, gardening and cooking.

Lea says she’s learned that, “you’re going to mess up a lot in marriage, so it really boils down to the good moments”. But there’s no one she’d rather share her touring life with. The biggest problems they usually face are the venues that claim to be accessible but aren’t. “I do my own booking now because it was so hard to know what you were walking into. We’d pull up to a gig and it would have a bunch of stairs. I’m like, ‘Didn’t you look at a picture of me?

“And I don’t want to be lifted on to the stage any more because it sends a really negative message to other people – ‘You’ll never be able to do this on your own.’ Green rooms are often in the basement or upstairs, places I can’t get to, so it would be nice if people thought about that, too. The next step would be for other artists to make a stand and say they don’t want to play at places that people can’t get into.”

Society simply hasn’t caught up, says Lea. “We’re good at remembering LGBTQ and people of colour and women in our policies, but we have to stop leaving disabilities out of the conversation.”

She’s been thinking a lot, lately, of how her frightening illness in the weeks before her wedding “ended up being a very important part of our story, and how something so negative ended up being life changing”. It’s time, she believes, for mainstream culture to change the narrative around disability.

“The way people talk about disability is still pretty negative, it’s seen as suffering … ‘Obviously they would wish to be able bodied.’ But now we have Disability Pride, where you don’t have to feel bad about having a disability. I don’t think that’s caught on yet, but it’s cool to be alive at this time when we’re changing the conversation.”

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from → Famously DisAbled, Fun Stuff

Billy Monger Wins Helen Rollason Award At SPOTY 2019

December 17, 2018
by

British racing driver Billy Monger has been honoured with the Helen Rollason Award at the BBC Sports Personality of the Year show.

Monger, 19, had both his legs amputated following a crash during a Formula 4 race at Donington Park in April 2017.

He returned to racing in March 2018 – less than a year after the accident – at the British Formula 3 Championship.

‘Billy Whizz’ then claimed his maiden British F3 pole position on his return to Donington Park in September.

He was presented with his award by his hero, five-time Formula 1 world champion Lewis Hamilton, surrounded by his family, team and the Donington Park marshals, doctors and nurses who helped to save his life.

“I have to say a massive thank you to my doctors and surgeons because without them I might not be here today,” Monger said.

“It’s a real honour to share the stage with them because they saved my life.

“I set my targets quite high after my accident to get back racing and without everyone at Carlin Motorsport I wouldn’t have been able to achieve my dream.

“Motorsport is a team sport. Their belief in me more than anything allowed me to achieve this.”

The Helen Rollason award recognises outstanding achievement in the face of adversity and was introduced to the show in 1999 in memory of BBC Sport journalist and presenter Helen Rollason MBE, who lost her battle with cancer during that year at the age of 43.

Previous winners of the award include Hillsborough disaster campaigner Anne Williams, charity marathon runner Ben Smith and last year’s winner Bradley Lowery, whose parents accepted the award posthumously.

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Rachel Johnston: Woman With LD Died After All Her Teeth Were Removed

December 14, 2018
by

A disabled woman died after having all her teeth removed by a dentist at an NHS trust criticised for its “drastic” full extractions from other vulnerable patients.

Rachel Johnston underwent the operation after it was deemed necessary because of severe tooth decay.

But she collapsed hours after being discharged and spent days on a life-support machine in hospital, before her devastated family were told medics could not do any more to save her.

The procedure was carried out by the community dental service in Worcestershire. Two more families have told the BBC of their concerns with the service after their sons had the same “extreme” treatment without their knowledge.

In both cases, they were expecting their sons, who have learning disabilities, to have a small number of teeth removed but were left shocked when they emerged from the operating theatre with no teeth left.

Worcestershire Health and Care NHS Trust, which runs the dental service, insisted it followed the correct procedures for vulnerable patients, while three clinical commissioning groups are investigating Ms Johnston’s death.

Campaigners have said 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.

“There should never be a situation where such extreme treatment comes as a surprise,” said Sarah Coleman, from Mencap.

What happened to Rachel Johnston?

A passion for singing 1980s pop star Shakin’ Stevens and the computer-animated film Ice Age helped make Ms Johnston, 49, the life and soul of Pirton Grange Care Home.

But a lifetime of dental problems meant the Johnston family were told earlier this year a “full dental clearance” – the removal of all her teeth – may be needed.

“I asked if they could take a few out at a time – it seemed like a big operation – but was told they only wanted to put her under the general anaesthetic once,” said her mother Diana Johnston, from Evesham.

On 26 October, her daughter, who suffered brain damage after contracting meningitis as a baby, was anaesthetised at Kidderminster Hospital for the removal of all her teeth.

Ms Johnston’s temperature dropped during the procedure but after coming round she was in high spirits, her mother said, and was discharged four hours later.

The following day, care home staff phoned her mother to say she was very unwell.

“She was bleeding quite a bit and her tongue had swollen right up. But she was just lying there. It was like there was no life.”

The following day she was rushed to hospital with breathing difficulties.

Her daughter was put on a life support machine but her family was eventually told there was nothing more doctors could do for her.

She died on 13 November, 10 days after the machine was turned off. A coroner is investigating.

“She was so strong – she contracted meningitis at six weeks old and doctors said if she makes it to 10 you’ll have the biggest bonus,” said Mrs Johnston.

“Well she got 39 more years. She fought everything that was thrown at her, which makes what happened even more difficult.”

What concerns do other families have?

Nora Ashmore’s son Kelvin had suffered tooth decay after years of problems brushing his teeth.

“He’d bite down on the toothbrush, it was very difficult,” said Mrs Ashmore.

Three years ago, aged 32, he had to go to Worcestershire Royal Hospital to have some decayed teeth removed.

“I had to sign a form for them to do what was necessary,” his mother recalled.

“When he went into recovery, there was a lot of blood [around his mouth]. I thought it seemed a lot for a few teeth.”

Mrs Ashmore said a man and woman then told her all her son’s teeth had been taken out.

“I said ‘pardon?’ I couldn’t believe what they were saying. I was so shocked.”

Mrs Ashmore said she felt the procedure was “so radical, so drastic”.

“If they’d have said beforehand ‘we think this is the best way forward’, I might have understood.

“It’s something we’ve tried to forget. You think ‘they must know best’.”

It is a situation familiar to Debbie and Jon Perry. Their son, in his 30s, also had all his teeth taken out by the trust around the same time as Kelvin.

They said they were expecting him to have a deep clean, some fillings and a few extractions.

“We signed some documents but they didn’t tell us they were going to take all his teeth,” said Mrs Perry.

“We were very shocked,” her husband added. “He was very distressed. He was looking at us, like, ‘what have they done?'”

“It’s affected him a lot. He’s got no confidence now, doesn’t want to go out on days out, holidays, anything,” said Mrs Perry.

Why are people with learning disabilities prone to tooth decay?

There are many reasons, including behavioural problems that affect teeth brushing, gastric reflux, and some chromosomal disorders.

The NHS runs community dental services around the UK to look after people who find going to the dentist difficult.

Dentists must obtain informed consent before carrying out treatment but some patients do not have the mental capacity to do this.

A dentist will assess the patient’s capacity in line with principles set out in the Mental Capacity Act (England) 2005, said Charlotte Waite, who chairs the British Dental Association’s England Community Dental Services Committee.

“Where patients do not have this capacity, the dentist may provide treatment in the patient’s best interest,” she said.

“The legislation states that dentists should provide treatment that is the ‘least restrictive of the patient’s rights and freedom of action’.”

It is not always possible to complete a full examination of a patient’s teeth before they undergo anaesthetic.

“In those cases, the dentist should usually discuss the potential possibilities with all the appropriate people involved in making a decision that’s in the best interest of the patient,” said Ms Waite.

What does the health trust say?

Decisions sometimes have to be made in the treatment room because dentists do not want to pause a procedure while a patient is under anaesthetic, a spokesman for Worcestershire Health and Care NHS Trust said.

Dentists do not want to risk patients being anaesthetised several times, so in some cases decide to remove non-restorable teeth to avoid this, said Rod Smith, Associate Medical Director for Specialist Primary Care.

“The consent process is clear that fillings would be done if the teeth are restorable, with extractions carried out if not, and that ultimately the aim is to render the patient dentally fit at the end of the procedure,” he added.

“The feedback we receive across our community dental service is very positive but we will always listen to patients and families to see if there is more we can do to ensure their experience is a positive one.”

In the case of Ms Johnston’s death, a spokesperson for the three Worcestershire CCGs said: “Whilst it would not be appropriate for us to discuss the details of any specific case, we can confirm that all relevant agencies are committed to work together to share the facts and review the circumstances leading up to a recent case of the death of a person with a learning disability.”

What do organisations that help people with learning disabilities think?

“Sadly, it is very common for there to be a lack of communication between healthcare professionals and people with a learning disability and their families,” Sarah Coleman, Mencap’s health policy officer, said.

“More must be done to ensure people with a learning disability can access good quality dental care as soon as they need it, before we reach the point where multiple teeth need to be extracted.

“People with a learning disability deserve the same quality of treatment and care as anyone else, and it’s simply not good enough when they don’t get it.

“Making a best interest decision on a matter such as whether to give a general anaesthetic, or to remove teeth, is extremely serious and requires careful consideration.”

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from → mainstream madness

Pakistan’s First Female Blind Cricket Team

December 14, 2018
by

Pakistan is in the process of creating its first ever international female blind cricket team.

The team is due to play its first match in January – in what will only be the second ever international series of women’s blind cricket.

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Sarah Gordy MBE Becomes First Person With Downs To Get Honorary Degree At A UK University

December 14, 2018
by

An actor and campaigner has become the first person with Down’s syndrome to receive an honorary degree from a UK university.

Sarah Gordy, 40, who has starred in Call the Midwife, was honoured by the University of Nottingham on Wednesday.

In her acceptance address, she said she was on an “unexpected journey” and told graduates to “believe” in themselves.

In November, Ms Gordy became the first woman with the condition to be made an MBE.

She has been hailed an “inspirational role model” for challenging attitudes towards people with learning disabilities by her performances in theatre, film and television.

Ms Gordy received a standing ovation for her speech to fellow graduates, telling them that as a child she was told her life might be limited.

“If I believed all the things that people said I couldn’t do, I would not have done any [dancing, acting and campaigning],” she said.

“Don’t listen to doubt… believe in yourselves.”

Jane Gordy, Sarah’s mother, said disability had never held her daughter back.

“As far as I was concerned Sarah was going to have every experience there is and if she wants to do something, just do it,” she said.

The actor said ahead of the ceremony that she was “excited” about the honorary degree and that “things were changing for people with learning disabilities”.

The Mencap campaigner became the charity’s first official ambassador with a learning disability in 2013.

She modelled for their “Here I Am” campaign to raise awareness and improve understanding towards the 1.4m people in the UK with a learning disability.

Mencap CEO Jan Tregelles said: “Our pride in Sarah Gordy knows no bounds. What a woman.”

Ms Gordy became an honorary Doctor of Laws at the ceremony at University Park campus.

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from → Famously DisAbled, progress, updates

Blind Cyclist Conquering Himalayas

December 13, 2018
by

Divyanshu Ganatra, who lives in the western Indian city of Pune, lost his eyesight at 19 due to a disease called glaucoma.

But he is determined not to let his disability get in the way of his love for sports, including cycling in the Himalayas.

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Elaine McDonald OBE Dies

December 12, 2018
by

Elaine McDonald OBE, the former ballerina who in 2011 faced a battle for night care to help her use the toilet after a stroke, has sadly passed away.

Respected blogger Indigo Jo has published a short tribute.

Alison Cameron, a blogger we haven’t come across before, has published a longer tribute which focuses on Ms McDonald’s life as a ballerina.

Ms McDonald’s case will stay with our editor for a long time to come. We are sad to read of her death tonight.

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Almost Half DLA-PIP Transfer Claimants Get Lower Or No Award

December 11, 2018
by

With many thanks to Benefits And Work.

47% of disability living allowance (DLA) to personal independence payment (PIP) claimants either get a lower award or no award at all, according to figures released by the DWP today.

The figures for reassessment claimants show that in total:

  • 39% had their benefit increased
  • 14% had their benefit left unchanged
  • 22% had their benefit decreased
  • 21% got no award at all after assessment
  • 4% were disallowed before the assessment
  • 1% withdrew their claim

Results varied according to the claimant’s condition.

For example, 40% of claimants with psychoneurosis had their award stopped altogether, compared with 37% of claimants with psychosis, 28% with learning difficulties, 16% with arthritis and 15% with back pain.

One bit of bright news in the figures is that 28% of claimants were awarded PIP at the highest rate for both components, compared to 16% under DLA.

You can download the full statistics from this link.

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from → disability political policies, politics

One In Four PIP Claimants Lose Benefit On Review

December 11, 2018
by

With many thanks to Benefits And Work.

25% of personal independence payment (PIP) claimants who have their award reviewed end up with no award at all, while 16% have their award cut, according to figures released by the DWP today. The figures also show that fewer than half of new PIP claimants get an award.

The full statistics show that out of 505,000 claimants whose PIP award has been reviewed since June 2016:

  • 25% had their award stopped completely
  • 16% had their award decreased
  • 16% had their award increased
  • 43% had their award maintained at the same rates

There were large variations in review outcomes depending on the main disabling condition of the claimant.

For example, 52% of claimants with a malignant disease have their award stopped or reduced, compared to 46% with psychiatric disorders, 36% with neurological disease and 32% with respiratory disease.

You can download the full statistics from this link.

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Hero Bionic Arm Gives Confidence To Amputees

December 11, 2018
by

A Bristol-based robotics company, Open Bionics, has developed the world’s first medically-certified 3D-printed artificial arm for amputees.

The Hero Arm, with its artificial hand, can fit children as young as nine years old. Its motor is controlled by muscles on the residual limb, allowing the user to carry out many tasks as if the hand was real.

Open Bionics hope the £5,000 bionic arm could be made available on the NHS.

BBC Click’s Kathleen Hawkins went to meet Raimi, who says the arm has given her a new confidence.

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Lauren Steadman Eliminated In Strictly Semi Final

December 10, 2018
by

Same Difference congratulates Lauren and AJ on a wonderful performance throughout this year’s competition.

No one wants to leave the competition at this point, but tonight it was Lauren Steadman‘s turn to take her last bow as she narrowly missed out on a place in the Strictly 2018 Final

She performed two dazzling routines with Pro partner AJ Pritchard in the Semi-Final – a Tango and a Samba – but they failed to impress the Judges, landing bottom of the leaderboard once again and finding themselves in the Dance-Off for the first time this series following the public vote. They opted to perform their Tango as they went up against Ashley Roberts and Pasha Kovalev, who were now in the bottom two for the third week running.

But once both couples had danced, the Judges voted unanimously to save Ashley and Pasha. Darcey Bussell justified her decision, saying: “It’s really hard because you’ve worked so hard and you’ve got so far to the Semi-Finals, fabulous. But on a more finished performance, the couple I would like to save is Ashley and Pasha.”

Their votes sealed Lauren and AJ’s fate, sending Ashley and Pasha through to next week’s Final.

Despite leaving so close to the climax of the competition, Lauren had some lovely words to share on her Strictly experience, telling Tess: “I have absolutely loved my Strictly journey and it has been so much more than anyone ever tells you it’s going to be and that you thought it would be. Down to the smallest things; I mean outfits, hair, makeup, this man [AJ], the Judges, all the choreographers. It’s just… I can’t tell you just how magical it is.”

AJ also had plenty of praise for Lauren, saying: “Lauren has been fantastic. Honestly, at the beginning of the series I couldn’t have expected to make the Semi-Final, which was just beautiful, but honestly I’m so proud of you as a person. You have changed so many people’s opinions and it has always been about ability not disability. You have attacked everything, you have always been stubborn, you have always been ‘I will be able to get this lift’ even though it’s not going to work, but we’ll get there somehow by Friday and Saturday. But for me honestly it’s been a fantastic journey and you’ve done yourself proud.”

Lauren has inspired so many of us throughout her time on Strictly, but it doesn’t end there – she’ll be on the It Takes Two sofa with AJ this Monday night at 6.30pm on BBC Two!

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New Charter For Airlines And Airports Could Make #WheelchAIRTravel Easier

December 7, 2018
by

Air travel could become smoother and less fraught for disabled passengers if a new charter for airlines and airports is adopted, say ministers.

Disabled flyers have long complained of lost or damaged wheelchairs, struggles with access on planes and in airports, and poor customer service.

If adopted, the charter would remove the £2,000 limit on payouts for damaged wheelchairs.

It would also enforce better training for airline crews and baggage handlers.

In the longer term, the charter would encourage the industry to look at ways to allow people to take their own wheelchairs into aircraft cabins.

More than half (57%) of passengers with a disability say they find flying and using airports difficult, according to a survey by the Civil Aviation Authority (CAA).

Accessibility minister Nusrat Ghani said that statistic needed to be addressed and the proposed charter included measures to make “real changes”.

“We are committed to continuing the progress the industry has already made in making the aviation network truly open to all,” she said.

Chris Wood, from campaign group Flying Disabled, said the charter was what they had been working towards.

“My aspiration is to have people flying in their own wheelchairs to a destination within two years and it looks as if the UK could lead the way in making this happen,” he said.

Frank Gardner, who travels widely for his job as BBC security correspondent, has shared some of his own experiences to highlight the obstacles faced by wheelchair users.

In March, on his way back from Ethiopia, he was stranded on an empty aircraft for almost two hours after staff said they had lost his wheelchair.

At the time, he said: “That is your legs gone – it is a basic human right”.

Mr Gardner, who has used a wheelchair since being shot in Saudi Arabia in 2004, has spoken of airports having a “casual disregard” for disabled passengers.

Last year a paraplegic athlete dragged himself along the floor through Luton Airport after his self-propelling wheelchair was left behind on a flight.

And in November a man with a spinal problem was taken to hospital after he collapsed at Heathrow Airport while waiting for a booked wheelchair that failed to turn up.

Analysis: Changes welcome but how long to wait?

By BBC disability news correspondent Nikki Fox

When it comes to flying, if you have a disability, physical or invisible, the problems are never ending and progress slow.

This Passenger Charter pinpoints some of the key issues for disabled passengers – increasing the limit on lost or damaged mobility equipment, better training for staff and getting wheelchairs on planes.

All will be welcomed by disabled people and those who have been campaigning for change.

What is unclear is how this will all work.

The government will have to find a way of getting around the Montreal Convention – a set of rules the aviation industry has had to follow since the 1990s.

One of those being how much an airline has to reimburse a passenger for lost, broken and often expensive, wheelchairs.

There is also no clear indication of how long it will take to see real change.

At the moment, these new measures will feed into the government’s aviation strategy, but as yet, no date has been set.

Some airports are already introducing measures to improve the experience for disabled flyers.

At Gatwick, one of the airport lounges has been specifically designed for passengers who require assistance and some security lanes are now accessible for passengers with a range of disabilities and staffed by people trained to recognise and respond to their needs.

Gatwick’s chief operating officer Chris Woodruffe said “Flying can be a challenge for people with a disability and airports, in partnership with airlines, can change that by improving their practices and infrastructure so that everyone has an equal opportunity to fly.”

The government’s aviation strategy has been supported by Airlines UK, an association representing 13 airlines, including British Airways, EasyJet and Virgin Atlantic.

The charter is part of the government’s aviation strategy which will be considered in a 16-week consultation, due to begin this month. The government says the policy will be finalised next year.

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Hollyoaks Stars Reveal More On Special Disability Episode

December 7, 2018
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Hollyoaks stars have opened up about the soap’s upcoming special diversity episode, which is due to air in the new year.

The episode will see Mandy and Darren make a big decision about their unborn baby, who has spina bifida – a condition where the unborn baby’s spine does not develop properly.

Speaking about the episode, in which Mandy will interact with people with disabilities, actress Sarah Jayne Dunn hinted that it will open her character’s eyes.

“We’ve got a really big week that week, but there’s one episode which is a disability awareness episode,” she told press including Digital Spy. “It’s little Oscar [who’s deaf] singing in a little choir, and he is nervous. He doesn’t want to do it. Brooke then helps him.

“Mandy and Brooke [who has autism] have a really lovely scene together where she’s having one of her attacks, and Mandy brings her back around. And there’s a scene with Maxine and Minnie [who has Down’s syndrome]. I’m so excited.

“This episode almost follows Mandy around the village, and she has lots of interactions with people with disabilities. And I think for her, it cements that actually you can have a normal life. She sees these beautiful children living a normal life and being really happy.

“So I think that’s a really lovely episode, and a big moment for her, to go: ‘We can accept this.’ She still wants to give the baby its best chance at a normal life, but she knows that they can accept it.”

Speaking of researching the episode, Sarah continued: “We’re parents ourselves and we’ve read up on spina bifida. It’s actually really quite common as well. I didn’t realise that. It’s like one in every thousand.

“Obviously I’ve had storylines before when Mandy’s had children. But this is the first time where I’ve actually now got my own child, and it is easier to relate to how that must feel, and the decisions that Mandy’s got to come to, and what it all means moving forward for them as parents.”

Speaking of Hollyoaks’ diversity, Ashley Taylor Dawson (Darren) said: “The proudest moment for me has always been those moments, when it’s not just about having a giggle and being funny or doing dramatic scenes and all the rest of it – which is all really great.

“But it’s when you actually feel someone, when they talk to you, and they’re genuinely telling you about that experience and how they relate to what you’ve done in the show. You can be quite… I wouldn’t say ‘flippant’ about it at times, because you are going to work, and you’re doing your job. But when you hear that, you realise that you’re hitting home and that’s a rewarding thing.”

Sarah added: “We do do a lot of things first. The show’s always been known for that, and obviously Luke’s rape story, way back when, was one of my first storylines… It’s just that. We do tackle things that other soaps don’t.”

“And the feedback we get from charities is amazing,” Ashley added. “You can do work all year, raising money for charity, but to get people taking it upon themselves to approach the charity and open up – then you’re doing something special. So it’s good.”

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Phantom Rectum And Other Questions About Ileostomy Bags

December 6, 2018
by

There’s nothing about sex and relationships that author and YouTuber Hannah Witton will shy away from talking about – including little-discussed topics such as disability and sex. She’s frank, informed, funny and focused on breaking down taboos.

Then there’s the Little Mix video. Recently, the 26-year-old – who earlier this year underwent emergency surgery to have her colon removed and a stoma created – featured in the band’s music video for the song Strip.

The stoma – an opening in the tummy – means Hannah lives with an ileostomy bag she calls Mona. She has blogged about her journey to “love her new body”, including publishing a mini-documentary about an underwear photo-shoot in which her stoma and her scars are on display.

Here, and for the Ouch podcast, she “shoots the breeze about pooing into a bag” with two more experienced stoma users – BBC presenter Sam Cleasby, who runs the So Bad Ass website, and Blake Beckford who is “most well known for having a stoma and a sixpack”.

Thousands of people in the UK are living with a stoma bag, having undergone surgery for a number of conditions, including bowel cancer, Crohn’s disease and ulcerative colitis.

Here’s everything you didn’t know you wanted to know about living with an ileostomy bag – warning, topics include phantom rectums, Barbie butts and sex.

What on earth’s an ileostomy bag?

An ileostomy is an operation involving the small intestine being diverted through an opening – or stoma – in the abdomen. A bag is then placed over the stoma to collect liquid and waste, which is emptied into the toilet.

According to Hannah, the stoma looks “red, squishy and moist. It has no nerve endings, you can’t really feel it if you touch it, and poo comes out of it.”

All three had theirs fitted due to ulcerative colitis – where the colon and rectum become inflamed and ulcers develop on the colon’s lining.

“I often forget that I have one until I go to the toilet,” says Hannah. “The only time I feel it, is if there is any kind of gas. Then the bags get a little bit crunchy, or if my output is kind of liquidy, then it gets a bit sloshy.”

Is it high maintenance?

“At first it’s all consuming,” says Sam. “You have to learn this whole process of how you look after it, how you change it, how you empty it. Now it is totally just part of my daily routine – I have a shower, change my bag.”

All three say they also have to get up in the middle of the night to empty their bags to prevent leakage.

Can you eat normally?

“My family is Indian,” says Sam. “When I was in hospital a nurse told me: ‘You’ll never be able to eat curry again.’ I was ready to rip out the drips in my arms. She was wrong. You have to just try different foods and now there’s pretty much nothing that I wouldn’t eat.”

She says, though, that the first time she ate beetroot, after the surgery, she was horrified: “I thought I was haemorrhaging from the inside out.”

Having a stoma means food isn’t digested as well as someone with a fully-functioning system.

Hannah finds it “fascinating and disgusting” to watch food emerge and likes to “pull out long bits of mushroom”. Sam, meanwhile, looks out for whole peas in her bag, and pops them while they’re in the pouch.

Is it smelly?

Hannah says the output – or poo – smells once it’s out of the bag, for example while it’s being emptied. In the bag, however, she says you won’t smell a thing.

“If you smell a fart, it is 100% not me because there are filters. So whoever’s got a functioning butthole, it was them.”

One thing that does smell a bit fishy when it comes out of the bag is, well, fish. But Sam has a top tip – add a drop of minty mouthwash to the pouch which neutralises the fish so you won’t smell a thing.

Hannah likes to talk about sex, so, does that mean can you still do it if you’ve had your plumbing re-routed?

“Hell yeah,” says Sam.

“You can’t take your bag off during sex – you’d let all your output out,” adds Hannah. “For me it was more the mental barriers like body confidence, feeling insecure and overcoming those. From a physical sense it doesn’t really affect anything other than a bag flapping around.”

But it’s not so straightforward for everyone.

“I’ve got a gay male friend who has a stoma and has the Barbie butt – when you have your rectum and anus removed and they sew everything up, down below. That changed his sex life,” says Sam.

Hannah still has a rectum, but says she doesn’t think there’s enough information out there.

“I’ve no idea how long it is, how fragile it is. Because anal play is not just a gay thing, it’s for everyone, so I don’t know what I can do with my butt.”

While we’re there, what’s a phantom rectum?

“People who have lost a limb, still feel pain or itching or they feel like their limb’s still there,” says Sam. “So that’s the same but in your rectum. It’s like your brain doesn’t know that it’s not attached anymore.”

Hannah adds: “At the beginning I got it all the time. I was talking to my nurse about these urges that I need to poo. She said: ‘Next time just go sit on the toilet and feel it out.'”

Sounds peculiar, what’s the cringiest moment you’ve had?

For Sam, it was earlier this year in San Francisco. She felt the skin around her stoma start to burn – a sure sign that it’s leaking. She found a supermarket with toilets and dashed inside.

“There was a massive queue and by the time I got there it was everywhere – from my boobs to my knees,” she says. “I ended up having to throw away my leggings and T-shirt and had to come out of the toilet in just a bra and dungaree dress crying and walk slowly past this queue of people.

“There are times where it just feels quite devastating to have an accident in public, but I can laugh about it now.”

Hannah says she has a Can’t Wait Card from Crohn’s and Colitis UK which she can flash in cafes or shops so she can use their facilities without having to give a long explanation.

Are stomas always so troublesome?

“It’s given me my life back,” says Blake, “because living with ulcerative colitis was just dreadful. You feel a lot of pain and sickness. I’d get to a point where I wouldn’t leave the house for the sake of having an accident.”

For Hannah, it wasn’t so liberating.

She was diagnosed at the age of seven and had a lot of difficulty with inflammation. But between the ages of 15 and 25 she went into remission. This changed last year.

“This flare up just came out of the blue and completely wiped me out. I was in hospital for a month and had to have emergency surgery.

“I don’t feel like getting a stoma gave me my life back. I want to go back to my life before all of this. But having said that, I’m not ashamed of it.”

Crohn’s and Colitis Week runs until 7 December.

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From Stammer To Sermon

December 6, 2018
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“As a boy, I couldn’t say the word chemist. That’s when my difficult journey with words began.”

Father Patrick Lagan would struggle to say certain words out loud and his stammer got progressively worse as he grew up.

“I told myself I had a problem with my vocal chords,” the priest, who is usually based at St Eugene’s Cathedral in Londonderry, told BBC News NI.

“I just couldn’t get certain words out. It leaves you incredibly frustrated.”

He said he stopped answering the telephone at home.

“That was dangerous. You start to avoid things and that’s not good for your confidence.

“People would have stared at me the odd time. I never got seriously bullied though.”

He later joined the McGuire Programme, which offers a method of controlling stuttering, and it changed his life “completely”.

So much so, he was able to finish a reading at his leavers’ mass from St Patrick’s College in Maghera.

“It was a reading from the prophet Jeremiah,” he said.

“That was a big turning point for me because I finished the piece.

“I realised for the first time that I could really do this. It was a big confirmation for me. It transformed my life.”

‘Patience’

The McGuire Programme has courses around the world.

It explains to people why they have a stutter, the physiological aspect of it and how to breathe and pause in the right places.

Fr Lagan said: “I learned how to accept who I was and then I started going to the classes to learn how the breathe and take my time with words.

“You need a lot of patience and self determination but slowly but surely you get there. It’s important to talk to people, read different books and seek guidance.”

Parishioners’ verdict

“He’s fantastic,” said Carmel Moore, from Rosemount in Derry.

“He has overcome a lot. I think it’s a great message he is sending out to young people.”

Peter Houston, from the Waterside, said he was “really good to talk to” and the stammer “did not hold him back at all”.

“He has too many good attributes to let that hold him back in life,” he said.

“He’s a good example to young people and anybody really.”

Fr Lagan said he knew he wanted to become a priest at a young age.

“The Catholic Church was always very supportive. Certain clergymen were a great help along the way and told me to take things slowly.

“There are still days where I think I could do better. I go back and practise. Sometimes I rehearse before I do weddings or funerals in the cathedral.

“It’s amazing to think I’ve come this far.”

Northern Ireland’s five health trusts have told BBC News NI that about 600 adults and children are being treated for a stammer.

However, many people also seek independent care through programmes and charities.

“I would advise children who have a stammer not to be afraid,” said Fr Lagan.

“Those who are going through a difficult time should seek the right help. It’s not a hopeless situation.

“Carry on, persevere and don’t let anyone get you down.”

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Labour Calls For WRAG Cut To Be Reversed

December 5, 2018
by

With many thanks to Benefits And Work.

Labour is claiming that 46,000 sick and disabled claimants have so far been hit by the decision not to pay an additional amount to claimants in the work-related activity group of employment and support allowance (ESA).

The work-related activity component of ESA, paid at a rate of £29.05 a week, was ended for new claimants in April 2017.

According to Labour, there are now 46,000 ESA claimants whose ESA claim is under a year old and who will therefore not have been eligible for the work-related activity component.

Of these, 29,000 claimants have a mental health condition as their primary disabling condition.

Labour have called on the Conservatives to reverse the cut.

You can read more on the Labour party website.

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Labour Will Restore Legal Aid For Benefit Appeals

December 5, 2018
by

A Labour government will restore legal aid for people appealing against cuts to benefits such as universal credit, the shadow justice secretary, Richard Burgon, is to announce.

Those seeking to challenge decisions by the Department for Work and Pensions on welfare payments, many of which are incorrect, will be able to obtain legal advice to help them pursue appeals, Labour is pledging.

Burgon argues that restoring such financial support would encourage the DWP to get decisions right first time, thereby reducing costs for the Ministry of Justice.

More than two-thirds of appeals against DWP decisions on personal independence payments (Pips) and employment support allowance (ESA) are successful, says Labour, adding that those decisions have affected thousands of vulnerable people with illnesses, disabilities or in poor health.

Since the coalition government’s Legal Aid, Sentencing and Punishment of Offenders Act (Laspo) came into effect in early 2013, the number of people receiving legal aid to challenge benefit decisions has fallen by 99%. The MoJ spends more than £100m a year on tribunals disputing appeals against benefit decisions. In addition, the DWP has spent more than £100m on Pips and ESA reviews and appeals since October 2015.

The UN special rapporteur on extreme poverty and human rights, Philip Alston, warned last month that cuts to legal aid meant many could no longer afford “to challenge benefit denials or reductions” and were “thus effectively deprived of their human right to a remedy”.

Since Laspo came into effect, many expert benefit lawyers have left the field because cases were no longer funded. The MoJ has experienced the deepest cuts of any Whitehall department since 2010; its budget is to shrink further over the next two years.

Burgon said: “People should never be expected to navigate a complex appeals process all by themselves. That can force some to give up their claim altogether after a wrong initial decision. Others endure months of stress trying to prepare their own case. It’s bad now but will be even more difficult after universal credit’s rollout.

“Cuts to early legal advice have been a false economy. Ensuring that people are armed with expert legal advice to take on incorrect benefits decisions will not only help people get the benefits they are entitled to, it should make it less likely that flawed decision takes place in the first place, which would be good for the individuals themselves, and help to tackle the tens of millions of pounds spent on administering appeals against flawed decisions.”

The number of claimants granted legal aid in benefits cases has plummeted from 91,431 in 2012-13 to 478 in 2017-18, according to Legal Aid Agency figures.

A 2010 Citizens Advice report (pdf) concluded that for every £1 of legal aid expenditure on benefits advice, the state potentially saved £8.80.

Labour estimates that to restore early legal advice to pre-Laspo levels for benefits cases would cost £18m a year and help about 90,000 cases.

The party has already pledged to restore legal aid funding for advice in all housing cases, reversing far-reaching cuts imposed by the government five years ago. It has also promised to re-establish early advice entitlements in the family courts and to review the legal aid means tests.

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SEN Provision A National Scandal Says Ofsted

December 4, 2018
by

Thousands of children missing out on support for diagnosed special educational needs in England is a “national scandal”, Ofsted has said.

There are 2,060 children in 2018 who have education, health and care plans (EHCs) setting out their needs, but who receive no support at all.

Some parents said a child is only assessed when they are excluded.

Ofsted chief, Amanda Spielman, also raised the issue of children disappearing from education.

‘Disturbing’

Ms Spielman says: “Too often, children who have been assessed still do not receive the services they need.”

She uses her annual report to expose what she describes as a “bleak picture” of too many children “failed by the education system”.

The report raises concerns about support for the 1.3 million pupils with special needs.

She says between 2010 and 2017, the number of children with a plan designating their needs, but who received no provision, had increased fivefold.

It had been above 4,000 in 2017, but has now been reduced to 2,060.

The Department for Education says some of these young people will be in the process of moving between schools or colleges.

“One child with Send [special educational needs and disability] not receiving the help they need is disturbing enough, but thousands is a national scandal,” says Ms Spielman, England’s chief inspector of schools.

The report also says: “Most disconcerting is that the whereabouts of some of our most vulnerable children is unknown.”

It revisits serious concerns that some pupils are being moved off the school roll illegally, because they may be seen as difficult to teach.

The report suggests 10,000 pupils cannot be accounted for and may have been “off-rolled” by schools in Years 10 and 11, because they did not appear on the pupil list of another state school.

It acknowledges many of these may have switched to independent schools, moved elsewhere or have been taken out for home schooling.

But, it says, it is unlikely that all of this number would fit into these categories.

Battle for support

The report says that compounding the difficulties faced by children with Send and their parents is that demand for EHC needs assessments from local authorities has risen by a half since 2015.

In 2017, 45,200 children and young people were assessed, while 14,600 were refused an assessment.

EHC assessments and plans were introduced in 2014 amid a shake-up designed to streamline and reduce the burden on the special needs education system.

They replaced statements of special educational needs which were carried out by local authorities.

Many parents complained of the long and difficult battles they had to get their child’s needs “statemented”.

But campaigners say the same issues are being faced with EHCs.

At the same time, the costs of supporting more children with lower levels of special needs were handed back to schools, which have been facing budget pressures of their own.

There was also a stated intention to reduce the number of children diagnosed with lower levels of special needs.

‘Truly wrong’

Some believe these are part of the reasons why the EHC assessment and plan system has come under pressure.

Both local councils and head teachers have been grappling with huge rises in demand for high needs support – those children with the highest level of need.

The report says: “Too often, the identification of Send is inaccurate or comes too late. This only exacerbates children’s needs and puts even greater strain on the need for services.

“Often the worst hand is dealt to those who do not quite meet the threshold for an EHC plan.

“Understandably, parents feel that to do the best for their children they must go to extreme lengths to secure an EHC plan, which not every child will need.

“Something is truly wrong when parents repeatedly tell inspectors that they have to fight to get the help and support that their child needs. That is completely contrary to the ethos of the Send reforms.”

Last month, representatives of local authorities told MPs of the funding problems they face in their high needs budgets.

Surrey County Council revealed it faced £30m in pressures on its high needs budget for this year, adding this was enough to trigger formal restrictions on any further spending at the council.

The Ofsted report is published as the school watchdog in Wales, Estyn, publishes its annual report.

Inspectors say secondary schools in Wales could do better, with only half judged good or excellent.

A Department for Education spokesman said the report “shows we have a robust education system – one where parents can feel assured that the vast majority of schools, early years providers, children’s homes and local authorities provide a high level of education and care for young people, regardless of their circumstances”.

“One of the key functions of a good regulator is that it highlights areas of concern and we will work with Ofsted, schools, local authorities and others to address the issues this report picks out.”

Head teachers union, the Association of School and College Leaders, said funding pressures were making it more difficult to give children the individual support to help them to overcome challenges they face.

And that means schools are less able offer the early intervention which prevents challenging behaviour escalating to the point of an exclusion.

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Disabled Candidates Grant Scheme To Return For 2019 Local Elections

December 4, 2018
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People with disabilities are to be offered thousands of pounds to help them run for elected office in next year’s council elections as part of an effort to tackle under-representation in town halls.

Grants averaging £4,000 will be made available to some to cover costs of campaign expenses including specialist transport, screen reader software, sign language interpretation and braille transcription.

Only 10% of councillors have a disability, compared with about 20% of the UK population. The government is offering £250,000, which is expected to fund around 60 candidates. Almost 9,000 council seats will be contested in local elections in May.

Mayoral and police and crime commissioner candidates will also be able to apply to the scheme, which is to be relaunched by the equalities minister, Penny Mordaunt, on Monday three years after it was scrapped.

“Empowering people with disabilities leads to better decisions and more effective outcomes for all of us,” she said. “Unless every one of our citizens can reach their full potential, our nation never will.”

Officials hope the return of the scheme will encourage the main political parties to prioritise the selection of people with disabilities. Applications for grants will be accepted from January.

Disability rights campaigners called for the scheme to be expanded, but welcomed its return.

Sue Bott, the deputy chief executive of Disability Rights UK, said: “Local councillors make decisions on a myriad of important areas which impact on disabled people. From social care to education budgets, we need to hear more voices from disabled people on local issues.

“We hope this is the beginning of something which will see funding increase. Political parties across the spectrum have a poor track record when it comes to selecting and supporting disabled candidates. They should be doing better.”

Representation is worse in parliament than in local councils, with five MPs out of 650 having declared themselves as disabled.

Studies have shown that cuts to welfare and local authority budgets have fallen disproportionately on people with disabilities. Last month the UN rapporteur on extreme poverty and human rights, Philip Alston, said austerity measures in the UK meant the government had breached its human rights obligations towards people with disabilities.

Alston cited figures from the Social Metrics Commission showing that a fifth of the population were living in poverty and nearly half of those were from families in which someone was disabled.

On 2 May, 281 councils in England and Northern Ireland are being contested. There are also six mayoral elections in England.

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Disabled Palestinians Defy Challenges

December 4, 2018
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Some laughed at him, others told him that he wouldn’t succeed. But with a strong will and positive attitude, Abdulrahman Abu Rawaa proved them wrong.

With just one arm and leg, he can easily ride his bike along Gaza’s sandy streets.

He took off the pedal and chains to adjust the bike to his needs, allowing himself to easily balance on the bike and push himself forward.

It’s the easiest way for him to get around his neighbourhood in the “Bedouin Village” in the northern Gaza Strip.

“Learning how to ride a bike has been my greatest accomplishment. It might not look so, but it really is,” Abu Rawaa said.

“Everyone told me it’s dangerous; some people criticised me [for trying] and even made fun of me at first. But I challenged all of that. I’ve proven to myself and to others that my disability isn’t really going to ‘disable’ me.”

For the 23-year-old, life has always been about trying.

Having been born without an arm and then losing his leg after two surgeries, he hasn’t allowed his physical disability to prevent him from trying to live life to the fullest.

Monday marks the International Day of Disabled Persons. Despite the immense obstacles, Palestinians in Gaza have shown a strong will to defeat their disabilities and achieve their dreams.

For the two million Palestinians living in Gaza under an Israeli-Egyptian siege, life is already difficult enough.

But for those with physical disabilities, they face additional challenges – something as simple as moving from one neighbourhood to the other in one of the world’s most densely populated areas is an immense challenge.

Most buildings are not accessible for the disabled people. There are no braille signs for the visually-impaired. With a dire economic situation, there are little to no resources to assist them.

Artificial limbs made in Gaza are typically of poor quality since the blockade has disrupted imports of prosthetic limbs and raw materials used to make them.

The limbs are made out of hundreds of different parts, but even if a single part is missing, it’s difficult for the limb to function.

Consequently, for many in Gaza, the prosthetic limbs that they use are for aesthetic purposes – to be able to put on a prosthetic leg or arm while taking photos for special occasions, for instance.

Rawaa had tried wearing an artificial limb, but it was terribly uncomfortable, despite costing $2,000 – an exorbitant amount for the average family in Gaza.

It was impossible for Rawaa to walk with it, as it pulled and scratched his skin.

In the first grade, he tried to use a wheelchair, which was also futile. He would fall to the ground and would have to push his chest against the wheelchair seat to push forward and move.

“But in fourth grade, I once saw my brother Tareq riding his bike and I asked him to let me try. It was a good try, although I fell. My father was impressed that I can balance myself on the bike, and I asked him for a bike. He bought me one. Step by step, I did just fine. And in the sixth grade, I totally depended on it to go to school, though my school was around two kilometres away from home.”

Stigmatisation and a lack of knowledge about disabilities persist in Gaza, Rawaa explained. Some ask him how he can cook or fix his bike on his own. For Rawaa, these are strange questions since he is entirely self-reliant.

“When my bike is broken, I’m the one who fixes it,” Rawaa said. “Some people say ‘You can’t!’ Immediately, to them I say, why don’t you try? It could work and it could not, but at least try. If you’re willing to try, you’ll succeed in one way or another. Everyone should have the will to try. Life is all about trying.”

‘They’ve amputated my leg, not my dream’

While misconceptions about disabled persons persist, Rawaa believes it has decreased over the years due to the three Israeli military assaults on Gaza and the Israeli attacks on the Great Return March demonstrations, which has left dozens of unarmed demonstrators disabled.

According to Gaza’s health ministry, at least 5,300 Palestinians have been injured by Israeli bullets since the start of demonstrations on March 30. AT least 68 Palestinians have had their legs amputated.

It has become a common sight today on the streets to see Palestinians with missing limbs. Unlike Rawaa, who was born with a disability, they face a harsh learning curve in adapting to their new life.

Alaa Aldali, 21, has been trying to persuade himself that he was born without a leg to adjust more easily. Israeli forces shot his leg with an expanding “butterfly” bullet on March 30, the first day of the Great Return March demonstrations. 

He says he was standing with his friends more than 300 metres away from the Israeli fence when he was suddenly hit in the leg. He found himself on the ground, with smoke coming out of his wound.

“It was scary… It wasn’t like a bullet; it looked like a grenade exploded in my leg,” Aldali said.

After undergoing eight surgeries in the hopes of saving his leg, it was amputated due to serious damage to his arteries and nerves.

“It’s quite hard, but that’s all I can do now. You know, just on the way home, while I was getting out of the taxi, I thought my right leg was still there and I almost fell,” Aldali said from his bedroom in Rafah, in southern Gaza.

Trophies, medals and plaques decorate his table. For the past four years, he has spent practically every waking moment on the move, cycling, and would mostly come home just to sleep.

Ranked third in the occupied Palestinian territories, Aldali’s dream of representing Palestine internationally presented itself with an invitation to compete in the international cycling competition that took place in Indonesia in late August.

But his dream was crushed that fateful afternoon. Since then it’s been an uphill battle – mentally and physically.

Aldali says he’s determined to keep fighting for his dream of competing for Palestine as a cyclist, even if it’s just with one leg.

“They’ve amputated my leg, but not my dream. I’m coming back to do my favourite sport. We’ll also return to our home. Those sacrifices are not going to no avail,” Aldali said.

Heavy unemployment rate

For others, such as 27-year-old Abeer Elhorokly, the Israeli occupation affects them before they’re born.

During the First Intifada in 1992, her then-pregnant mother was subjected to gas inhalation by Israeli forces. Consequently, Elhorokly was born with deformed nervous cells, which left her in a wheelchair.

Like Aldali, Elhorokly found her passion in playing competitive sports – basketball and tennis. Her team has achieved first place in the Gaza Basketball League for the third time in a row and she aspires to compete internationally in tennis for disabled athletes.

However, with the siege on Gaza now in its 12th year, many Palestinians – disabled or not – are deprived of such opportunities.

Gaza’s job market remains stagnant with an unemployment rate of 44 percent, but for the disabled population, it’s at 90 percent.

Elhorokly graduated two years ago with a BA in Public Relations and Media, and is determined to find work. Palestinian labour law stipulates that five percent of its workforce must include disabled people. However, this isn’t applied on the ground, Elhorokly said.

“I want to be a big journalist and prove that we’re capable. To be a journalist and have a disability at the same time is a real challenge and I love challenges,” Elhorokly said.

Rawaa has been raising chickens in his backyard for a living. He would like to eventually afford a new home as his family’s house becomes flooded in winter.

He has been approaching various institutions with his proposal, trying to find funding to expand his chicken-raising project. Rawaa has yet to find support, but he says he will keep trying.

“Never let anyone or anything stay in your way. If you think you can’t take the stairs by yourself, ask yourself – did I try? You can always find ways. Create your own solution,” Rawaa said.

“One should always have the hope and courage to jump over life’s challenges – to try at least.”

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Carly Barton, 32, First UK Patient Prescribed Cannabis, For Fibromyalgia

December 3, 2018
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A 32-year-old woman is believed to be the first person prescribed cannabis in the UK after it was made legal for medicinal use last month.

Carly Barton, from Brighton, who suffers constant pain from fibromyalgia following a stroke in her 20s, was given a prescription by a private doctor who specialises in pain management.

The NHS is not funding the treatment, so she is having to pay £2,500 for three months’ treatment herself.

She hopes that if she can show it is helping her chronic pain, it could “open the floodgates” for the government to decide to pay for the treatment for herself and others.

“In terms of money this is going to cost me everything I have, so two and a half grand for three months’ supply,” she said in a Facebook video.

“The reason I’m putting this on the line is I feel this is a route to getting an NHS prescription.”

The drug is having to be imported from the Netherlands and Ms Barton is unsure when she will be able to collect her medication – which consists of two flower-based cannabis products.

She will take a gramme of each product every day.

Ms Barton said doctors need clearer guidelines on when and how they can prescribe the drug, and she is also worried a “two-tier system” will emerge where people who cannot afford to pay for the treatment have to continue buying it illegally.

“I shouldn’t realistically have to pay this amount of money,” she said.

“It’s going to last me three months and then I’m back in the same situation… I will be back to being a criminal unless i can convince the NHS specialist to rewrite the prescription.”

Talking to Sky News last month, she described how she has previously had to go out “in agony in the dark” to buy the drug from strangers.

Ms Barton said the high cost of the drug is down to the cost of importing it and that the cannabis flower itself – produced by Dutch company Bedrocan – only costs around six euro a gramme.

Doctors got permission to prescribe cannabis products on 1 November after a summer of campaigning by parents including Charlotte Caldwell, whose son Billy has severe epilepsy.

She went to Canada to procure the cannabis oil she says controls his seizures, but was not allowed to bring it back into the UK.

Her fight to keep the drug led to a policy review by Home Secretary Sajid Javid who brought in the law change after advice from experts on the Advisory Council on the Misuse of Drugs and the UK’s chief medical adviser.

The new guidelines say doctors should only prescribe cannabis-based medicine if other options have been exhausted, for conditions including rare childhood epilepsy and multiple sclerosis as well as to help deal with nausea from chemotherapy drugs.

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from → progress, updates

Today Is The International Day Of Disabled People

December 3, 2018
by

Same Difference asks you to spend it celebrating yourself or the disabled person in your life!

Here’s more information from the UN.

2018 Theme: Empowering persons with disabilities and ensuring inclusiveness and equality

This year’s theme focuses on empowering persons with disabilities for an inclusive, equitable and sustainable development as part of the 2030 Agenda for Sustainable Development. The 2030 Agenda pledges to “leave no one behind”. Persons with disabilities, as both beneficiaries and agents of change, can fast track the process towards inclusive and sustainable development and promote resilient society for all, including in the context of disaster risk reduction and humanitarian action, and urban development. Governments, persons with disabilities and their representative organisations, academic institutions and the private sector need to work as a “team” to achieve the Sustainable Development Goals (SDGs).

This year, the UN Secretary-General will launch on the Day a flagship report, entitled “UN Flagship Report on Disability and Development | 2018 – Realizing the SDGs by, for and with persons with disabilities”. Events at UNHQ on the International Day of Persons with Disabilities at UN Headquarters will bring together Member States, UN entities, Mayors, national and local policy makers, civil society organizations, academic institutes and organizations of persons with disabilities to discuss the way forward for inclusive, equitable and sustainable development. Read more about the events.

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Trump’s ‘Wall’ For Disabled Immigrants

November 30, 2018
by

At the signing ceremony for the 1990 Americans With Disabilities Act, President George Bush observed that the legislation had much in common with the fall of the Berlin Wall the year prior. The new law “takes a sledgehammer to another wall,” Bush remarked, “one which has for too many generations separated Americans with disabilities from the freedom they could glimpse, but not grasp.” Our current president, infamous for mocking Americans with disabilities and unraveling the social safety net, plans to rebuild that wall, putting America’s promise of freedom again further out of reach for people with disabilities.

The Trump administration’s proposed regulation, released in early October, would unfairly harm people with disabilities and their families in their efforts to live permanently in the United States. The “public charge” regulation would apply to immigrants already on the lawful road to citizenship, including applicants for permanent residence (a “green card”) living in the United States, and individuals outside of the United States, such as family members of American citizens seeking admission to the United States. While the concept is older than today’s modern immigration law, President Trump’s regulation would radically expand it in dangerous ways. (Public charge is a term used to describe a person deemed to be primarily dependent on government assistance.)

Harkening back to the dark history of anti-immigration policies, the public charge proposal spells out five “heavily weighed negative factors” that would make having a disability a strong basis for denial. In typical Trump fashion, the proposal privileges wealth, fast-tracking individual applicants who can provide evidence of annual incomes 250 percent above the federal poverty line, which for a family of four is about $63,000 annually. Thus, the proposal’s fundamental injustice of deliberately excluding people with disabilities, who are disproportionately likely to live in poverty, is compounded by the abuse of equating wealth with worth.

The proposal also attacks some immigrants with disabilities and their families already living in the United States who are already contributing to the culture and economies of American communities. As The Times has reported, the regulation would put a person’s lawfully obtained immigration status at risk if he or she uses — or even applies for — Medicaid, the Supplemental Nutrition Assistance Program (SNAP, formerly Food Stamps), Section 8 housing assistance or other public programs.

The regulation would also consider whether a person has private insurance that covers all of his or her health care costs, again rigging the system against people with disabilities. Private insurers don’t cover community living supports like meal preparation, household care and maintenance, and help with bathing, eating, dressing and other routine activities. For many people with disabilities, Medicaid is the only financing available for those basics, but the public charge regulation would mean that using Medicaid could put immigration status at risk. No one should have to choose between the basic needs of life and living in the United States with loved ones.

Mr. Trump’s assault on the disability community isn’t confined to immigrants. All Americans with disabilities — immigrants and citizens alike — would be harmed by the public charge regulation, because of its consequences for the health care and personal care provider work force. According to the Paraprofessional Healthcare Institute, about one-fourth of direct care workers in America are immigrants. And about 40 percent of all direct care workers meet their own basic needs with help from Medicaid, SNAP or other public programs. If finalized, the public charge regulation will mean fewer people able to provide the care that seniors and people with disabilities need to live full lives and contribute to their communities.

Children would also be hit especially hard by the public charge regulation — again, citizen and immigrant alike. One-fourth of children in America have at least one immigrant parent, according to the Kaiser Family Foundation. Though most are not immigrants themselves — an overwhelming majority were born in the United States — they would suffer the denial of basic needs alongside their parents. Children eat at the same table as their parents, and they sleep under the same roof, so if parents are too afraid to apply for help, their children will be no less hungry and no less homeless.

The proposal also weighs childhood as a “negative factor” because children are not self-sufficient. Since children with disabilities are often judged as incapable of growing into self-sufficient adults, they would be considered a public charge more often than their nondisabled peers.

Fortunately, the proposal has not yet been approved. And those who oppose this attack on American families with immigrants, including people with disabilities, can work together to stop it.

All Americans have a right under the law to speak our minds on federal regulations. And the law requires the Trump administration to consider what we say. Our organizations are taking a stand against the public charge regulation and urging others to speak out, too, by leaving a comment on the proposal before the Dec. 10 deadline.

At the Americans With Disabilities Act signing ceremony nearly 30 years ago, President Bush remarked that America had inspired other countries, with pledges to right historical wrongs with legislation of their own to open doors for people with disabilities. As Mr. Bush said then, the A.D.A.’s “passage has made the United States the international leader on this human rights issue.” And this leadership has not been maintained without a fight. The disability community has proved time and again — in fighting to protect the law, in pushing back against judges who don’t believe in bodily autonomy — that we will meet every attack with equal force to preserve our rights and our dignity.

We must continue to push back. Mr. Trump’s proposed public charge regulation says people with disabilities aren’t valuable members of American society. What he doesn’t seem to realize is that Americans with disabilities and our families are a powerful force that will fight back when he mocks or marginalizes. We must recommit to being a country where everyone is valued, where people with disabilities can fully contribute and where all can thrive.

 

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Domestic Violence Refuges Not Accessible For People With Physical Disabilities

November 29, 2018
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Just one in ten domestic violence refuge spaces in the UK is accessible to people with physical disabilities, a BBC investigation has found.

Of the 131 councils that responded to a Freedom of Information request by BBC 100 Women, 20 had no accessible spaces.

And only 11% of individual domestic violence spaces are fully accessible.

It comes after a report last week suggested women with disabilities are more likely to experience domestic violence than those without.

The ONS report said 16.8% of women with long-term illness or disability were subjected to domestic abuse, compared to 6.3% of women without a disability.

Domestic abuse can include physical, sexual or emotional abuse – as well as withdrawing care from people with long-term illnesses or disabilities.

‘Used and abused’

Sarah (not her real name) said she was repeatedly sexually abused by someone she thought was a friend.

She said her physical disability added to her feelings of helplessness.

“I was just used and abused. When he was around me, everyone thought he was really nice, but they didn’t know what was going on in the background,” she said.

“If I hadn’t had a disability, the situation probably never would have occurred. Because that first night I would have just jumped out of bed and gone ‘on your bike’.

“I said ‘enough’ a number of times, but then he would still come round.”

Domestic violence refuges provide a place for both women and men to flee violence.

However, a Freedom of Information request by BBC 100 Women found only 11% of individual domestic violence spaces in the UK are fully accessible to survivors of abuse with physical disabilities.

Others may be accessible to survivors with other types of disability.

BBC 100 Women submitted FOI requests to 210 councils in the UK that provide refuge services, of which 131 responded.

Accessible spaces

Some local authorities, including Carmarthenshire and Solihull, said all of their refuge spaces were accessible to people with a physical disability, but the majority said less than 20% of their spaces were.

Twenty of the 131 councils that responded had no wheelchair accessible spaces, including the London Borough of Lambeth, which has 52 spaces.

Bec – whose full name has been withheld to protect her clients – is a manager at one refuge that has been purpose built to accommodate disabled women, their children and sometimes a carer.

She said: “If we can’t do something to try and create a space that welcomes those women, and keeps those women as equally safe as women without a disability, it was going to be a hugely missed opportunity.”

Sue finds accessible spaces for disabled women through Women’s Aid’s “No Women Turned Away” project.

“Sometimes if you’ve worked with somebody for three, four weeks and you still haven’t found anything and you’re phoning up saying, ‘ever so sorry, but there’s no space again now’.

“It can be very upsetting.”

Council funding for women’s refuges has reduced by 6% overall in the last five years according to data from 144 out of 210 UK councils contacted.

The largest cuts to council spending on domestic violence refuges were made by Southampton City Council, whose funding for domestic violence refuges has reduced by 65% since 2013/4.

Other councils including Newcastle upon Tyne and Darlington have increased their spend on domestic violence refuges by more than 150%.

Image caption Some refuges have been purpose built to accommodate disabled women and their children

Government figures show an estimated 1.3 million women and 695,000 men in England and Wales experienced domestic abuse in the year ending March 2018.

A Local Government Association spokesman said: “Although [councils] have experienced significant budget reductions, they continue to work with other local partners to support victims.

“By 2020, councils will have lost almost 60p in every £1 they had from the government to spend on local services in 2010.”

A government spokesperson said: “We are providing £22m which will support more than 25,000 domestic abuse survivors across England.”

The 24-hour National Domestic Violence Helpline, can provide support for women experiencing domestic violence, their family, friends and others calling on their behalf. The contact number is 0808 2000 247 or 0808 802 1414 in Northern Ireland.

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Builders Lobbied Against Accessible Homes

November 29, 2018
by

Private housebuilders have been accused of “appalling self-interest” over their lobbying against building more accessible homes for disabled residents.

The Home Builders Federation (HBF) has been objecting to councils across England that wish to fix new targets to increase the number of homes with room for wheelchair users and which could be adaptable.

It has made submissions to at least 17 authorities, from Liverpool to Sevenoaks, arguing that new local planning policies seeking more accessible housing could make it unprofitable to build new homes. The submissions also question whether predictions of an ageing population mean an increased demand for adaptable and accessible housing would be certain.

Charities including Age UK, the Centre for Ageing Better and Disability Rights UK said on Tuesday they were alarmed at its objections to planning policy proposals to make greater disability access mandatory. It said only 7% of homes were classed as accessible and that building to a higher accessibility standard would cost about £500 more.

The HBF represents highly profitable housing firms including Persimmon, which recorded gross profits of £565m in the first six months of this year, during which it built 8,000 new homes – a margin per home of about £70,000.

“Without homes that enable us to live safely and independently for as long as possible, we will see increased and unsustainable pressure on our health and social care services and much-reduced quality of life for people in older age,” the charities told the HBF in an open letter.

Unless it was enshrined in local planning policy, it remains optional under national regulations to incorporate features that make new homes suitable for people with reduced mobility and some wheelchair users. It also remains voluntary to make them fully wheelchair accessible, unless town halls make it mandatory.

In one submission to Broxbourne council in Hertfordshire, the HBF said: “The key issue we have with … policies that add financial burdens on the development industry in this local plan is that they have not been effectively tested.”

Objections have been raised by the HBF where it believes councils have not taken into account the financial impact of the proposals alongside other demands such as the provision of affordable housing, and said that if a council wanted to prioritise disabled access, it should reduce its demands for affordable homes.

An HBF spokesman said: “New homes are already more accessible than those built previously, but not all homebuyers want a home that has been adapted for accessible use.

“If government deemed that all homes should be built to higher accessibility standards it could make it a requirement. Currently levels are set by the planning system, which specifically requires local authorities to provide evidence to support their demands.”

“Their attitude is appalling self-interest,” said Cllr Pam Thomas, a wheelchair user and cabinet member for inclusive and accessible city at Liverpool city council, which has faced objections from the HBF to its plan to make 10% of new homes wheelchair accessible. “If they looked at this properly they would realise there wasn’t a problem with the cost or [extending] the footprint. They need to have a social conscience here.”

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SpongeBob SquarePants Creator Stephen Hillenburg Dies Aged 57

November 28, 2018
by

SpongeBob SquarePants creator Stephen Hillenburg has died at the age of 57.

The news was confirmed by Nickelodeon, which has broadcast the hugely popular cartoon series since 1999.

In a statement, the company said Hillenburg’s cause of death was motor neurone disease (also known as ALS) – a condition he revealed he had been diagnosed with in March last year.

As well as creating the character, Hillenburg also directed 2004’s The SpongeBob SquarePants Movie.

“We are sad to share the news of the passing of Stephen Hillenburg, the creator of SpongeBob SquarePants,” Nickelodeon tweeted from its official account.

“Today, we are observing a moment of silence to honour his life and work.”

The company’s statement added: “Steve imbued ‘SpongeBob SquarePants’ with a unique sense of humour and innocence that has brought joy to generations of kids and families everywhere.

“His utterly original characters and the world of Bikini Bottom will long stand as a reminder of the value of optimism, friendship and the limitless power of imagination.”

Following the news of Hillenburg’s death, SpongeBob fans began posting tributes on social media, thanking him for his creation, which “enriched lives” and “stirred up laughter for years to come”.

Hillenburg is survived by his wife of 20 years, Karen Hillenburg, and son Clay.

The SpongeBob SquarePants series has seen more than 200 episodes broadcast and has spawned two successful animated films.

The cartoon has also been made into a Broadway musical – with original songs by David Bowie, John Legend and Cyndi Lauper – which won a Tony Award earlier this year.

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from → Famously DisAbled, tributes

Work And Pensions Committee Want Carers Allowance Overpayment Evidence

November 28, 2018
by

With many thanks to Benefits And Work.

The commons work and pensions committee would like to hear from you if you have been contacted by the DWP in connection with a carer’s allowance overpayment.

As we reported last month, the DWP has launched a campaign against carer’s allowance overpayments that will see more than a thousand carers prosecuted and 10,000 fined by the DWP.

Many of the overpayments have arisen because claimants were not aware that there was an earnings limit for people receiving carer’s allowance.

The work and pensions committee is clearly unimpressed with this assault on carers.

As they point out, there are 6.5 million unpaid carers in the UK who make a hugely valuable contribution to society.

Yet earning just £1 over the earnings threshold results in them losing 100% of their carer’s allowance.

Committee Member Ruth George MP said:

“Our health and social care systems would fall apart without the contribution of unpaid carers, who perform a selfless and invaluable role for at least 35 hours a week to qualify for the £64.80 carer’s allowance – that’s a maximum £1.85 an hour.

“When I worked with retail staff, we would often see someone get a small pay rise and inadvertently exceed the earnings threshold. It was bad enough when this was picked up at the end of the year and they had to find and pay back hundreds of pounds.

“When carers are only being informed of overpayments years later and potentially being taken to court for thousands of pounds, it is imperative for the Committee to look at the evidence and question whether Government is acting in the best interests not just of individuals, but of society and the wider economy.”

The deadline for responses to the investigation is 22 December 2018.

You can find out more about the investigation by the committee and complete an online survey from the links on this page.  

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from → disability political policies, politics

Hernia Mesh Implants Cost Athlete Dai Greene Five Years Of Career

November 27, 2018
by

One of Britain’s most successful athletes was forced to sit out an entire Olympic cycle after suffering serious complications from mesh implants used to repair a minor hernia.

Dai Greene, a world champion hurdler who captained the Great Britain athletics team at the 2012 London Olympics, lost five years of his career after the surgery, which he was told would allow him to return to the track within weeks.

“The golden thing I got sold was that after three weeks you’ll be back running and after six weeks you’ll be completely fine,” he said. “It got advertised to me as foolproof … stronger than anything else you could have.”

After the surgery in 2013, Greene suffered acute pain. A series of operations to put things right revealed the mesh had become frayed and entangled with nerves in his pelvis.

Up to 100,000 hernia mesh operations are carried out in England each year, and the medical regulator has recorded 222 reports of “adverse events” linked to the process over the past decade.

But clinical registries and health data in other countries point to some products having higher complication rates, suggesting problems may have been under-reported in the UK.

Greene, 32, had the surgery in spring 2013 to correct a small hernia in the inguinal muscles around the pelvis.


He does not recall being told of any potential risks, but said his surgeon told him of a previous patient – a professional weightlifter – who missed his follow-up appointment after surgery because he was competing in the Olympics.

After seemingly making a quick recovery from the surgery, on returning to training he immediately began suffering significant pelvic pain. “Surgery alone shouldn’t cause this much discomfort,” he said.

By the autumn, Greene’s doctor concluded the original hernia was still present and the athlete had a second operation, which did not help.

Still unable to train, he underwent two mesh removal surgeries in Germany in 2014 and 2015 (on one side and then the other), which finally relieved the pain.

His surgeon found the mesh had frayed and become entangled with the nerves, which had to be snipped. “That’s why anytime I was moving I was in loads of pain, because there was something just constantly pressing on my nerve,” he said.

Complications from the multiple surgeries and time off training meant Greene also missed the 2016 and 2017 seasons, and lost lucrative sponsorship deals.

Q&A

“To have that much time off in your career, of no running, is just crazy,” he said. “From being one of the best in the world year after year to just falling off the radar entirely … It’s a massive frustration. I’ve only got a finite amount of time to do what I want to do in my career. I try not to think too much about [what happened] because then I’ll get bitter.”

Greene’s experience echoes those of other patients who have had problems with hernia mesh. The US Food and Drug Administration (FDA) cites pain, infection and hernia recurrence as the most frequent complications.

In some cases, the frequency of complications emerged only after products were used in huge numbers of patients.

Johnson & Johnson recalled one of its leading mesh implants in 2016 after German and Dutch registries showed it had a particularly high failure rate, five years after the implant was brought to market with no clinical trial. The company is facing class action lawsuits in Canada, Australia and the US.

In a statement, Johnson & Johnson said of its product, called Physiomesh: “Based on the available data, we believe the higher rates to be the result of multiple factors, including possible product characteristics, operative, and patient factors.”

The company added: “Our highest priority is the safety of those who use our products.”

This summer, Greene won gold at the British athletics championships and captained the GB team at the European championships. But the experience has shaken his confidence and he advises other athletes to be cautious.

“If you are going to see a surgeon there is only one response that they’re going to give you: that they can fix you with surgery,” he said. “It doesn’t mean it’s the right thing to do and it doesn’t mean that they can.”

He also has concerns about a lack of information available to patients regarding the pros and cons of surgery and implants.

“In sport we always like to deal in numbers,” he said, adding that it ought to be possible to provide basic success rates and the numbers of people who report pain or other setbacks after a procedure.

“It’s simply asking questions of people who’ve had surgery,” he said. “I feel like there’s nothing out there that’s that easy to get hold of for us. We just take whatever information the doctor is telling us or selling us as fact.”

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Helen Rae: Deaf Disabled Artist

November 27, 2018
by

This Californian’s work has been displayed all over the world. But she is unlike most other artists in two respects.

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A Tribute Post For Chris Hughes

November 23, 2018
by

I am very sad to read tonight that a Facebook friend and fellow Disability Rights campaigner, Chris Hughes, died this morning.

Chris worked in disability advocacy, protested with the Direct Action Network and was a member of Not Dead Yet UK, through which I came across him.

According to Liz Carr’s Facebook tribute, he contributed heavily to one of NDYUK’s biggest campaigns in 2015, in which 80 disabled people, including me, created posters which were taken to Parliament, explaining why we wanted assistance to live, not to die.

For me personally, that is an opinion I am passionate about and I will remember that campaign forever.

My thoughts are with members of NDYUK, members of DAN and everyone who knew Chris better than I did.

RIP Chris Hughes, thank you for your Facebook friendship and for all you did for Disability Rights.

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Video Recording Of PIP Assessments Begins

November 23, 2018
by

With many thanks to Benefits And Work.

The testing of video recording of PIP assessments goes live this month, the government has announced. At the same time they also claimed that customer satisfaction with PIP has skyrocketed to almost 90% and appeal rates are falling.

Sarah Newton, minister for disabled people, health and work, told MPs last week that:

There has been a 15% drop in the number of PIP appeals.

The customer satisfaction rating for PIP has risen from 76% to 87%.

PIP assessments consistently meet their quality target, which is over 90%.

As Benefits and Work revealed last year, an extraordinary 56% of Capita’s and 30% of Atos’ PIP assessments were found to be unacceptable – until the DWP changed the criteria in 2016 and the figures dramatically improved.

And as we discovered this year, PIP customer satisfaction surveys are based on a single question being put to claimants by telephone in a process that is not anonymous and is almost certainly carried out before the claimant has their PIP result, when most would prefer not to upset the assessor or the DWP.

In spite of this wealth of apparently positive data, the minister went on to say that:

“I am pleased to say, however, that our plans for the video recording of the assessments are going very well, and the live testing trial will start later this month.”

Benefits and Work is still not aware of any research which supports the idea that PIP claimants would prefer video recording of assessments to the less obtrusive audio recording.

At this stage we also don’t know whether claimants will have the option to have the cameras switched off and sound only to be recorded.

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from → disability political policies, politics

Anne Hegerty Reveals Aspergers On I’m A Celebrity

November 22, 2018
by

Anne Hegerty has been praised for opening up about her Asperger’s on I’m A Celebrity Get Me Out of Here.

Fans watched her speak about her condition with former EastEnders actress Rita Simons.

“I didn’t raise the autism issue. It’s not like: ‘I want you to know I have this interesting disability that you have to accommodate’,” Anne explained.

“If someone else raises it then I make it quite clear that I’m happy to talk about it.”

Anne – best known for her role on The Chase as The Governess – revealed she didn’t get diagnosed until she was 45 in 2003.

Eleven-year-old Joseph is one of the people who’s been inspired by Anne.

“Watching you makes me see that other people can have autism too and maybe I can have a cool job like you when I am older,” he wrote in letter posted to Twitter.

According to the NHS, Autism spectrum disorder (ASD) is the name for a range of similar conditions, including Asperger syndrome, that affect a person’s social interaction, communication, interests and behaviour.

People with ASD tend to have problems with social interaction and communication.

On Sunday’s launch show Anne was upset and told her fellow celebrity contestants: “I’m just really, really close to saying I can’t do this.”

In footage filmed before entering the jungle she said: “I’ve had to learn a lot about what I can and can’t do and what I can and can’t cope with.”

Along with Rita, X Factor runner up Fleur East and The Vamps singer James McVey, Anne lost a task so is living in a the basic-rations part of the camp sleeping on mats on the ground.

She explained to campmates she has to fully imagine herself completing a task before she actually does it or else it can throw her off.

“I really appreciate how nice and sympathetic they’ve been to me,” Anne told the cameras away from Rita.

“It was nice that they said I pick up on social cues because I’m never quite sure that I entirely do. I just get overwhelmed with all the things there are to do.”

The discussion with Anne led to Rita revealing she has an obsessive compulsive disorder (OCD) diagnosis.

“I used to be a real light switcher, tap checker. I’d spend hours doing it. It’s almost the complete opposite of you because yours is all logical and mine is all illogical,” Rita said.

‘I come across as bubbly but prefer being alone’

Niall Aslam quit this year’s Love Island for unknown “personal reasons”. He later revealed in a lengthy post he had been diagnosed with Asperger’s as a child.

“I’ve always been kind of a bit embarrassed about having Asperger’s and it’s quite a private thing for myself so I wasn’t going to go up to all the girls that I was trying to chat to and be like ‘oh by the way, I have Asperger’s’.

“I’m alright with maintaining friendships – I just get a lot of social anxiety, I can come across as quite bubbly but a lot of the time I just prefer being by myself instead of around people.”

“A lot of people don’t want to say they have it because a lot of people aren’t very educated on it so seeing someone like Anne saying it does a lot for the cause”.

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Mum Paid £6 On Universal Credit- And Given Leaflet On How To Budget

November 21, 2018
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A mum who was paid just £6 in Universal Credit was handed a leaflet on how to budget, her daughter has said.

Vonny LeClerc, of Edinburgh, shared a heartbreaking story of her mother’s apparent experience with the controversial Universal Credit sheme.

According to the journalist from Edinburgh, her 55-year-old mum was reduced to tears after receiving the shockingly low benefit payment.

And she claims that she was handed a leaflet on how to budget the £6 for the remainder of the month.

The Daily Record reports that Vonny decided to launch a GoFundMe asking the public to show their support for her mum, and within 21 hours her modest goal of £100 was completely smashed – raising more than £6000 from over 500 generous donors.

She says that her mum has been left “broken” by Universal Credit – which she claims left her having to rely on her daughters to buy her food.

Vonny claims that she was handed a leaflet on how to budget the £6 for the remainder of the month (Image: GoFundMe)

On the GoFundMe page, Vonny wrote: “Here’s the reality of universal credit: my mother is 55. She’s worked all her life. She was attacked in her care job months ago and now has a serious back injury and her doctor will not let her go back to work.

“She’s had to apply for UC. She got her first payment today: £6.

“The woman in the job centre told her to cancel her life and house insurance, even though she has cancelled everything including TV license, phone, internet, and bills. She tried to give my mum a leaflet on how to budget £6 for the month.

“My mum burst into tears, and told the woman it was insulting, and left. She’s now sitting at home with no telly, no internet, nothing but the four walls to look at. No so she can get out of her rural village. Her grown daughters are having to buy her food.”

“My mum burst into tears, and told the woman it was insulting, and left. She’s now sitting at home with no telly, no internet, nothing but the four walls to look at. No fuel so she can get out of her rural village. Her grown daughters are having to buy her food.”

She continued: “She’s going to fall into arrears with all her bills. She cannot work right now. She can’t even get out to socialise and see her family. Can’t afford the heating. She is broken.

“My mother is a proud woman and would never ask for help, so I am doing it on her behalf. If you can spare £1 right now it would make all the difference to her until I can help her get this met sorted.

“Thank you from the bottom of my heart.”

The post clearly pulled on the heartstrings of different members of the public, with hundreds coming together in a bid to help out and commenting messages of support.

Replying to the fundraiser, Gary Edwards said: “This is what happens when people help each other. Best wishes to your mum”.

Simon McCleary added: “Worryingly sad times… hope mum’s situation gets sorted!”

And another, who just left the initials E.B, said: “I’m so angry for the two of you that this happened. Sending all the best to you and your mother.

“Sorry I can’t donate more but glad to see so many are.”

A DWP spokesperson said: “Universal Credit replaces an out-of-date, complex benefits system that discouraged people moving into work.

“We’re committed to ensuring people get the support they need and the latest figures show 83% of Universal Credit claimants are satisfied with the system.”

“Scotland has significant welfare powers, including to top-up existing benefits, pay discretionary payments and create entirely new benefits altogether.”

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from → disability political policies, mainstream madness, politics

Stigma Pushing Nairobi’s Disabled Children Into Orphanages

November 20, 2018
by

Behind the gates of an orphanage at the end of a dirt road on Nairobi’s outskirts, more than 30 children are being given plates of rice and beans in a stuffy room that smells as though it serves as dining room, physical therapy room and toilet. The scent of the food does little to mask the overpowering smell of faeces and urine.

Babies lie on worn, stained mattresses. Beside them, four children are tied in standing positions in order to “strengthen their legs”, the physiotherapist says. One boy is in visible pain, screaming and reaching out to one of the care-givers. This session will last two hours. One boy restrained in a chair is being spoon-fed by a staff member, who then slaps the child’s face.

Compassionate Hands receives donations from individuals and organisations around Kenya and across the world. Here, staff say four children sleep to a bed in overcrowded dorm rooms where they are locked in for 13 hours a day – conditions that are life-threatening, according to Disability Rights International (DRI), an organisation campaigning for children with disabilities.

Compassionate Hands’ executive director, Anne Njeri, was born with a disability and founded the centre to help others like her. “There is a lot of stigma and discrimination towards these children with disabilities,” she says. “The chances to survive, and access to public resources and to help them is very minimal. That is how most of them have ended up in institutions like ours.”

She denies staff’s claims that children sleep four to a bed, and says this only occurred while the orphanage was being built. “We try to give a chance to those who have little opportunities. Apart from sheltering them, we try to give them education, food and therapy. Sometimes not everybody will think you’re doing something good. But if it is ‘life-threatening’, the local authority would have come and told us. We are trying our best, we’re trying to build a place in the best way possible.”

Conditions here are not an isolated case. At the crumbling building of the Maji Mazuri institution in north-east Nairobi, a young man, believed to be 26, sits in a wheelchair tied to a pole in the yard. He is wearing a diaper, which attracts flies, and is playing with rocks he has picked off the ground. The staff say he will probably spend all day here – and he is likely to spend his entire life at the institution.

Janet Kabue from Maji Mazuri later told the Guardian: “No child spends the entire day tied to a pole, as they are taken in the dining hall to be fed, in the dormitory for their diapers to be changed.”

She said the young adult was rescued off the street and is “severely mentally challenged and epileptic”. Due to his condition he hits his head on surfaces or tries to bite other children, she said, which “necessitates securing his wheelchair to protect him from injury”. When the Guardian visited, the young man was quiet and did not move.

Inside the building, children with cerebral palsy and autism are locked in a small dorm room for at least 11 hours over night, according to one member of staff, and the DRI report echoes this allegation. The institution disputes the claim, saying that the children are not locked in the room, and that they are only there during sleeping hours.

Yet across Kenya, there is a culture of neglect in institutions for children with disabilities, according to a recent study by DRI. A two-year investigation by DRI and the Kenyan Association for the Intellectually Handicapped (Kaih), a grassroots organisation protecting the rights of children with disabilities in communities, found thousands of disabled children living in “dangerous” conditions at orphanages.

The study also found a culture of stigma and discrimination against people with disabilities that has led to widespread pressure on families to give up their children to orphanages.

Stigma against children with disabilities can lead to infanticide in some communities.

“The assumption that people with disabilities have no potential is so dangerous,” says Priscila Rodríguez, DRI’s associate director. “Once it’s assumed that they can’t have a full life, their lives are going to be thrown away. They’re either going to be left in isolated, inhuman places like this, or they’re going to be killed by their communities and families.”

Children are admitted to the Compassionate Hands orphanage after they have been abandoned by their families because of their disability. “Families want nothing to do with them because of their needs. In some communities they believe kids with disabilities are outcasts – a curse,” says Jackie, the facility’s coordinator, who does not give her surname. “They don’t want to be associated with them.”

Many children end up in institutions. There are at least 1,500 registered orphanages in Kenya, and potentially hundreds more that are unregistered, where children lack one-to-one care and can be locked away and restrained for hours on end, sitting or lying in their own excrement, DRI says, though there is no suggestion that this is the case at Compassionate Hands or Maji Mazuri.

Research has consistently shown that putting any child in an institution can cause psychological damage, and leads to developmental delays. Children living at such facilities worldwide are at increased risk of violence, trafficking for sex, drugs or organs, and torture.

“More and more we are seeing huge numbers of children with disabilities in orphanages. They’re the first ones to be taken in, and the last ones to be taken out,” says Fatma Wangare from Kaih. “Even in the orphanages they don’t have the skills or facilities to take care of children with disabilities.”

The discrimination against those with disabilities has deep roots and spans different social and economic groups. “Nothing prepares you to receive a child with a disability into the family,” says Wangare, who has a child with a learning disability. “There are still some communities where disability is taboo, and no one … wants to be associated with you if you have a child with a disability.”

Josephine has a 14-year-old daughter with cerebral palsy, and lives in Nairobi. She says there is an attitude of “just leaving them to die”.

The family has experienced persistent discrimination, including her daughter being refused entry to a bus. “Wherever I go out people would tell me: ‘This lady has been cursed.’ Some say I tried to have an abortion, or that I got pregnant with an old man and that’s why my child is like that,” she says.

Stigma is such that disabled children are known to have been killed in some communities – a practice that still occurs. Almost 40% of women interviewed by DRI who live in Nairobi said they had been pressured by their community or relatives to kill their disabled child. This rose to 54% of mothers living in rural areas.

George Otieno Mjoki has a five-year-old son with a disability and campaigns for the rights of disabled children. He and his wife were left to discover their son’s condition themselves after he was born, he says. “I remember one nurse remarking that they had better kill the child because they knew the frustration that parents would undergo,” he says.

He has worked in some rural communities where “even now they don’t allow the child to grow. They leave the child in the forest for the hyenas – it is still happening.”

In Kenya, 10% of the population have a disability. The country was among 44 nations to sign the UN’s Convention on the Rights of Persons with Disabilities. It has already committed to inclusive education, and a year ago the government banned the opening of new institutions (though it doesn’t stop existing facilities from admitting new children).

Crucially, the government has introduced a social protection fund where families with disabilities are given around $20 (£15) a month, reaching an estimated 47,000 families. In July it co-hosted a disability summit in London, drawing up 170 new commitments to the rights of people with disabilities. The international development secretary, Penny Mordaunt, praised the partnerships between the UK and the government of Kenya on these aims.

However, many people are yet to see such commitments translate to everyday life. DRI and other Kenyan rights groups are calling on the country to enforce laws against infanticide, offer support to vulnerable families, and mobilise funding and initiatives for community based support.

“What I need as a mother is not the $20, I need services in my community that are accessible and affordable for my child,” says Wangare. “The government is now more receptive to disability, but it can do more than that.”

“I imagine a society where we will say we are not taking persons with disabilities into orphanages, they are able to take care of themselves,” says activist Otieno Mjoki. “We are looking forward into our struggle for that world, one day.”

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from → international

Spyro The Dragon Remake Excludes Deaf Gamers

November 20, 2018
by

A hotly anticipated remake of the Spyro the Dragon video games has been criticised for excluding deaf gamers.

The new Spyro Reignited Trilogy does not have subtitles during the game’s video sequences, so deaf players cannot follow the story.

In a statement, publisher Activision said there was “no industry standard for subtitles”.

But many deaf gamers criticised the company’s position and said it was a “weak excuse”.

While the remade game does have on-screen text during character interactions, the video sequences that tell the story are not subtitled.

Activision said the development team had “committed to keep the integrity and legacy of Spyro that fans remembered intact”.

“I can’t even think of a recent game that didn’t have some basic subtitles for all dialogue,” said games reviewer Susan, who writes the One Odd Gamer Girl blog.

Games developer Mark Sweeney added: “‘There’s no industry standard for subtitles… so you couldn’t be bothered trying?

“The minimum industry standard is to have subtitles for all dialogue and audio cues.”

Activision said it would “evaluate” the situation.

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from → mainstream madness

Universal Credit Making Claimants Turn To Sex Work- And Consider Suicide

November 19, 2018
by

In the last week, two very different, very sad, very negative, effects of Universal Credit have had media coverage.

We thought we would link to both reports in one place.

  • Firstly, on Thursday, the Guardian reported a study which found that Universal Credit increases the risk of suicide among claimants.

 

  • Secondly, today, the BBC reports that Universal Credit is forcing women to turn to sex work.

Could it get any worse, readers? We don’t think so.

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from → disability political policies, politics

Amber Rudd’s Views And Votes On Welfare

November 19, 2018
by

The link, for those who can’t see the embed.

 

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from → disability political policies, politics

BREAKING: New DWP Secretary Is Amber Rudd

November 16, 2018
by

Amber Rudd has returned to the cabinet as work and pensions secretary.

She replaces Esther McVey, who quit on Thursday in protest at the draft Brexit agreement negotiated with the EU.

Ms Rudd quit as home secretary in April amid controversy over her handling of the Windrush controversy.

She admitted having “inadvertently misled” MPs over targets for removing illegal immigrants but a subsequent inquiry found she was let down by officials.

The BBC’s Iain Watson said it was a huge job given the controversy surrounding Universal Credit, the government’s flagship welfare reform.

He also said it showed Theresa May’s confidence that she could appoint one of her “allies” to such a key role given the turmoil over her leadership in the past 24 hours.

Ms Rudd becomes the sixth work and pensions secretary since March 2016.

A Remain supporter during the 2016 referendum, Ms Rudd has given her backing to Mrs May draft Brexit agreement, saying it is “not perfect but perfect was never on offer”.

The prime minister has yet to announce a replacement for Dominic Raab as Brexit Secretary, Environment Secretary Michael Gove having reportedly turned down the job on Thursday.

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from → disability political policies, politics

Louise Medus Mansell, Thalidomide Campaigner, Dies At 56

November 16, 2018
by

Tributes have been paid to the Thalidomide campaigner Louise Medus-Mansell, who has died at the age of 56.

Louise Medus-Mansell was born without arms and legs after her mother was prescribed the drug Thalidomide during pregnancy.

In the 1960s, her father fought a high-profile campaign for compensation and she became the face of the campaign.

Her family said she died in her sleep on 7 November following complications after a transplant operation.

In a statement, they said Mrs Medus-Mansell, who leaves behind two children, will be “greatly missed”.

“Throughout her life she inspired many, through disability rights campaigning and her work with the young group The Woodcraft Folk,” they added.

“She was well known in her hometown for her positivity, enthusiasm for life and many locals will remember her for whizzing round town in her chair, with children and dogs in tow.”

Originally marketed as a sedative, Thalidomide was prescribed to pregnant women in the 1950s as a cure for morning sickness.

By 1961 it was clear that it was causing serious birth defects and by later that year it was withdrawn in the UK.

Mrs Medus-Mansell, from Cheltenham, Gloucestershire, was one of the last babies born with the effects of the drug in 1962.

Ruth Blue, from the Thalidomide Society where Mrs Medus-Mansell was a chair and trustee, said she was “always an enthusiastic and vibrant personality” despite her “many health issues”.

“Louise once described herself to me as using her wheelchair as a battering ram, which I think really sums her up,” she said.

“When she was on a mission, nothing would stop her.

“She will be sorely missed by her family, her many friends in the thalidomide community and all those who had the chance to work with her over the years.”

In an interview with BBC Radio Gloucestershire in 2009, Mrs Medus-Mansell said a “single tablet” had stopped her arms and legs from growing but it was “no good crying over spilt milk”.

“We were told when we were born we would die at one week, one month and then that we’d be dead by teenagers and now most of us are in our late 40s,” she said.

“The majority of my life, I just get up and get on with it. There’s always somebody worse off than myself.”

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from → tributes

My Article For Mark Esho On Polio And Post Polio Syndrome

November 15, 2018
by

I was recently asked to write this article about polio and post polio syndrome, and Rotary’s work to end polio, for the author and entrepreneur Mark Esho.

I had the very interesting experience of interviewing Mr Esho and researching polio and post polio syndrome, two conditions I previously knew nothing about.

 

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from → links and plugs, sd1's original writing

BREAKING: ESTHER MCVEY RESIGNS FROM CABINET!!!

November 15, 2018
by

Over the Brexit deal. Readers, Brexit is a mess, but many disabled people and carers will celebrate this as a small silver lining.

We can only hope her replacement won’t be worse!!! We’ll bring you news of who it is as soon as we can.

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from → politics

National survey calls on disabled community to share experiences of access to music services

November 15, 2018
by

A press release:

A consortium of Arts Council funded organisations is calling on musicians, music educators and the parents of disabled children across the UK to help them gather data on the barriers facing disabled people with regard to access and participation in music.

The Department for Education’s National Plan for Music aims for “equality of opportunity for all pupils, regardless of race; gender; where they live; their levels of musical talent; parental income; whether they have special educational needs or disabilities; and whether they are looked after children.” But, the consortium asks, how well are these objectives being met, and what can we do together to make music more accessible for all?

Recent statistics published by the Musician’s Union show that increasingly children in state schools and particularly those from low income families are unable to access the opportunities available to their more affluent peers. More worrying still, there are no national data sets available that describe the experiences and particular barriers faced by disabled children and young people with regard to participation in music.

The consortium (comprising Creative United, Drake Music, Open Up Music, The OHMI Trust and Youth Music) is aiming to address this gap by conducting a series of surveys targeted at music makers, educators and retailers that will help build a detailed overview of the current provision of accessible music services across the country.

Findings and stories will be made publicly available on the Creative United website and shared with educators, funders, and policymakers across the UK to inform the planning of future projects and investment.

Today’s national call out coincides with Purple Tuesday, the UK’s first accessible shopping day. Mary-Alice Stack, Chief Executive of Creative United, which runs the Take it away scheme said: “We are determined to ensure that disabled people of all ages are given every opportunity to participate fully in music, and that both the music education and retail sectors are better equipped and prepared to respond to the access needs of disabled customers. But in order to achieve this, it’s essential that we understand more about the way in which disabled people are currently being supported. That’s why this research is so important.”

Surveys will remain open until 15 January 2019. Members of the public who complete the ‘Music Makers’ survey have the opportunity to be entered into a £100 prize draw.

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from → publicity

In California’s Wildfires, Disabled People May Be Left Behind

November 15, 2018
by

Same Difference shares this article with full understanding. We can’t do more, from the UK, than send our thoughts and prayers to everyone affected by the California wildfires. But, if you are affected, please know that our thoughts and prayers for your health and safety are very, very sincere.

California is on fire. Right now, multiple wildfires are raging across the state, with the Camp Fire in Butte County affecting 125,000 acres and 30 percent contained (as of Tuesday) in the north, and Woolsey Fire in Ventura County resulting in the evacuation Malibu and Calabasas.

I am a wheelchair user who uses a ventilator to help me breathe. Living in San Francisco, emergency preparedness is always in the back of my mind in the event of a power outage, earthquake, or fire. Every time a major disaster occurs, whether it’s far away or in my region, I wait for the stories of older or disabled people left behind during evacuations or encountering major problems accessing services at shelters and during recovery.

These tales pain me because I could easily be one of them, and because I know some of this suffering and death could be prevented with better infrastructure and policies.

While there are stories of heroic rescues by firefighters, first responders, volunteers, and neighbors, there are too many instances of older adults and disabled people dying or harmed due to lack of planning, accessibility, and neglect during catastrophic events like hurricanes Irma and Maria, just to name two recent natural disasters.

Did you know that the average age of those who died in the Napa County and Sonoma County wildfires was 79? These were people who might have had difficulties with mobility, communication, understanding, hearing, and seeing. Living in a rural area without social support or cellphone coverage can create a perfect storm of danger, trauma, and death. Planning by local, state, and federal governments must improve in partnership with disability advocates and other community organizations working on the ground.

Even with the best warning notification systems and strategic plans, people with disabilities are disproportionately impacted during natural disasters. Here are a few examples of the challenges and systemic failures disability communities faced, taken from a report assessing federally declared disasters between August 2017 and January 2018:

  • People in nursing homes and other institutions were not evacuated
  • Lack of equal access to shelters with some people being turned away due to their needs
  • Delays or failures in providing critical information in accessible formats (e.g., texts, video relay, video captions, sign language interpreters, plain language)
  • Gaps in access to food, water, and other forms of assistance
  • Lack of adequate health care, services, and equipment such as oxygen, dialysis, and durable medical equipment
  • Difficulties applying and receiving assistance from FEMA
  • People being unnecessarily institutionalized due to lack of housing options, disruption in community-based services, or problems navigating the system

Even more alarming is the fact that FEMA announced in May it is reducing the number of its Disability Integration Advisors from 60 to 5, leaving them to assist remotely rather than in person. I wonder when and if the president will ever respond to Governor-elect Gavin Newsom’s request for a federal emergency declaration for the counties affected by the wildfires after he threatened to withhold federal aid to California.

Last Saturday I received a text alert from the SF Department of Emergency Management stating the air quality in SF was unhealthy, advising “older adults, kids, and people with heart/lung disease to avoid strenuous outdoor activities,” with an AQI (air quality index) of 180 at 5 a.m. with 50 or lower as “good.”

I have limited lung capacity and felt some minor symptoms but nothing unmanageable or urgent. My friends with chronic illnesses and disabilities in the area are also feeling the effects of the Camp Fire, just as we had with the Carr Fire earlier this year. Many already had N95 masks or were strategizing about how to remain as safe as possible.

All of this requires privilege. I have a home with an air purifier and the choice of staying inside. While I don’t enjoy cancelling my plans, my health is a priority and this is nothing compared to the struggles of first responders, people who are displaced by the fires, and the incarcerated people forced to fight fires for $1 per hour.

Climate change is real. Frequent natural disasters are the new normal. Right now, disabled advocates are working with communities all over the state connecting them to the help they need. Community organizations and informal networks need support coordinating services and providing direct assistance. Our lives are at stake and thoughts and prayers are not enough. Below are some ways you can support people with disabilities and the general population during these wildfires and the ones to come in the near future.

5 ways to support

  1. Ability Tools is a program of the California Foundation for Independent Living Centers, providing medical equipment, daily living aids, and technology to people in shelters who need them. They are currently taking donations, and you can contact them via Facebook or by calling 1-800-390-2699 (1-800-900-0706 TTY). Support them by donating money or equipment in good condition.
  2. Donate to the Portlight Strategies/Partnership for Inclusive Disaster Strategies, a national organization on disability rights, accessibility and inclusion related to disaster operations. It manages a 24-hour disaster hotline for for people with disabilities and others with access and functional needs (1-800-626-4959 or info@disasterstrategy.org)
  3. Give money to Mask Oakland, a volunteer group of queer disabled people delivering free N95 respirator masks to Oakland’s most vulnerable. They use donations to buy more masks and post receipts of all their purchases. Twitter: @MaskOakland; Venmo: @maskoakland.
  4. Donate to the Northern California Fire Relief Fund by the North Valley Community Foundation to raise money to support the operations of organizations sheltering evacuees of the Camp Fire.
  5. Give to Supplying Aid to Victims of Emergency (SAVE) program from the California Fire Foundation, which gives $100 gift cards to people impacted by wildfires including firefighters and civilians.

You can also check out this list of resources and articles to learn more.

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from → international

Rob Delaney To Read And Sign CBeebies Bedtime Story In Makaton

November 14, 2018
by

Catastrophe star Rob Delaney is the latest celebrity to read a CBeebies Bedtime Story – which, in a first for CBeebies, will be signed in Makaton.

The actor will read and sign Ten in a Bed by Penny Dale on 16 November.

Makaton uses speech with signs (gestures) and symbols (pictures) to help people communicate.

Delaney said: “Our family learned Makaton to be able to communicate with our son Henry, who couldn’t speak due to a tracheotomy.”

Henry died aged two in January after spending half his life with a cancerous brain tumour.

‘Beyond honoured’

“My family loves to read together so naturally we’re fans of CBeebies Bedtime Stories,” said Delaney.

“I am beyond honoured to be the first person to read and sign a book using the Makaton language.

“We’re sad Henry isn’t here to see it, but we’re happy other families will get to enjoy a story told in Makaton.”

Other readers of the CBeebies Bedtime Story have included Dolly Parton, Orlando Bloom and Tom Hardy.

Delaney and wife Leah revealed in June they are to become parents for the fourth time.

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from → Fun Stuff, progress

Jobcentre Withdraws ‘Deceitful’ DWP Guidance Urging Staff To Help Claimants Back Into Work

November 13, 2018
by

Jobcentre staff have had to withdraw guidance that urged GPs to use “deceitful” tactics to help people off benefits and into work.

The “shocking” note asked doctors to send benefit claimants for a 45-minute session with a “Patient Coach” – without mentioning the coach worked for the Jobcentre.

And it suggested withholding vital “fitness for work” notes unless patients agreed to go.

Department for Work and Pensions (DWP) officials have now withdrawn the note, which was issued to a GP practice in Leeds, after being confronted by the Mirror.

The guidance had prompted outrage among disability activists who branded it “deceitful”, “awful” and “just wrong”.

Shadow Minister for Disabled People Marsha De Cordova said it was evidence of the DWP “ignoring claimant wellbeing to push forward its punitive policies.”

She told the Mirror: “A fit for work note should be supplied based entirely upon medical diagnosis.

“The DWP has undermined this by unfairly interfering in the relationship between a doctor and their patient.

“This shocking move could threaten patient safety and the integrity of medical practice.”

Jobcentre staff sent the one-page guide to a GP practice in Leeds after giving a presentation on a regional “patient advisory service”.

The scheme “co-locates” DWP staff in GP surgeries to help people not normally seen at Jobcentres to find work.

But campaigners argue it blurs a line between controversial back-to-work schemes and impartial medical help.

The guidance described how patients could attend an appointment for help with CVs and interview techniques, or to “access voluntary work”.

It then encouraged GPs not to explain what the session was for.

Instead it said: “Please tell the patient they are being referred to the Patient Coach.

“I will explain at the first meeting that I work for the Jobcentre but initially it may put some people off.”

The note claimed “the service is voluntary” and “I will not push anybody to do what they are not capable of or willing to do

However, it then told GPs: “You may consider issuing a fit note with the proviso that they attend an appointment with me before returning for another fit note.”

Labour MP Debbie Abrahams warned the government “has form” in trying to get sick and disabled people off their support.

The Mirror are demanding a halt to the expansion of Universal Credit and for a review to take place.

“Now they seem to be trying to put further pressure on them through their family doctor which has the potential to damage the doctor-patient relationship as well as putting GPs in a very difficult position regarding their medical ethics,” she said.

“I will be writing to the Royal College of GPs and other professional bodies to ask them about their guidance to their members on these matters.”

A spokesman for the British Medical Association insisted it “would always encourage doctors to be as open as possible”.

The BMA told benefits campaigner Alex Tiffin: “When a GP issues a ‘fit note’ it is based on the needs of the patient – part of which can be how best to support people back into work.”

DWP sources said the scheme was not aimed at any specific benefit and could be used by people who were not claiming benefits.

They insisted the guidance had been drawn up with the best intentions but acknowledged the wording was inappropriate.A source confirmed it “was produced for one GP surgery and has been withdrawn.”

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from → disability political policies, politics

Pathological Demand Avoidance

November 13, 2018
by

Some doctors in rural areas are having to apply for extra funding in order to diagnose patients with autism, the Royal College of GPs has said. The BBC’s Victoria Derbyshire programme has spoken to families with autistic children who are struggling to cope with their violent outbursts.

Jamie punches his mum and spits in her face while she cries, in footage captured on a tablet.

The seven-year-old has a rare form of autism called pathological demand avoidance (PDA), meaning a simple request to do something can lead to a violent meltdown lasting for hours.

The behaviour is not the fault of the children with PDA, as it is the condition that prompts them to behave this way. In some cases, they do not know what they are doing.

In the incident captured on video, Jamie is stressed as he does not want to go to school.

“I get very, very, mad and smash stuff,” he says.

His mum, Kate, from Bury St Edmunds – whose surname we are not using – says during violent episodes, he smashes up the house and has tried to attack her with knives.

She finds the video footage traumatic and hard to explain.

“Part of me can’t believe that is my child, because we have really good times,” she says. “My main concern is he is a risk to himself when he gets like that. He is not in control whatsoever.”

Some local authorities do not clinically recognise PDA – meaning children like Jamie with the condition often do not get the support others with autism receive.

More help

Jamie, who also has attention deficit hyperactivity disorder (ADHD), was aged just three when he started becoming violent and six when he was diagnosed with PDA.

The long wait for his diagnosis caused Kate – who is now a single mum – to spend nearly £10,000 on a private consultation.

“If my son had a more outward diagnosis, so if he had severe autism, I think we would have got help,” she says.

According to the NHS, Jamie is one of 700,000 people in the UK with autism.

GPs are usually the first point of contact when it comes to recognising the condition.

But there are concerns that doctors in rural areas have to ask for extra money to refer patients for diagnosis.

Dr Carole Buckley, from the Royal College of GPs, tells the Victoria Derbyshire programme: “We don’t have to get exceptional funding for heart disease, cancer, diabetes or depression. Why on Earth should we have to get exceptional funding for an autism diagnosis?”

A study of 1,200 parents by the PDA Society found 80% often experienced challenging behaviour from their child.

But many are not violent.

Dr Buckley says early intervention is key, with evidence suggesting most of the children who demonstrate challenging behaviour at nine still demonstrate such behaviour at 19 and 29.

National guidelines state the process of diagnosis should start within three months of being referred.

But the National Autistic Society says some children can wait “many months, sometimes even years, for a diagnosis and support, just because of the poor or overstretched services where they live”.

Black eyes

Ten-year-old Kierney’s family say they need more support. She is autistic and has also been diagnosed with PDA, as well as multiple anxiety disorder and depression.

Like many children with PDA, she is affected by the negative consequences of the condition as much as her family.

She often struggles to communicate – and when she becomes frustrated, the family home can become a place of chaos and violence.

Black eyes, bites, and scratches are just some of the injuries Kierney has inflicted on Erika, her mum. And there are times when the police have even had to be called to calm her down.

“I feel really bad when I hurt my mum and I don’t want to hurt her,” she says. “What I do to her makes me feel really upset and embarrassed.”

She thinks she would be able to stop being violent if she got the right support.

“If not, I think I will end up getting arrested, which I don’t want to happen. I just want to stay with my family and be happy.”

Erika has had to give up work due to her daughter’s condition, which she says has been made harder by social services, who have struggled to provide regular respite care.

“Children’s services have said numerous times there is nothing they can do to improve or change our situation,” she says.

‘Abandoning families’

East Sussex County Council says it has not been able to find a suitable carer since 2016, due to a shortage of care workers for children with additional needs in the area.

“It’s not always possible to find the services parents want or need,” a spokesman said, adding that they “will continue to look at options with families”.

Lib Dem MP Norman Lamb, former Care and Support Minister, says the government and NHS are failing families who are not being properly supported by their local authorities.

“In a way we are abandoning families to try to cope on their own with extraordinary complex circumstances and that’s really unacceptable,” he says.

“This is a human rights issue because we are failing people in terms of their rights to a family life and to have opportunities in life.”

He plans to raise the issue in Parliament.

A NHS England spokesman said services for young people’s mental health had increased and improved significantly in recent years, giving an extra 70,000 children access to care.

“The long-term plan for the NHS will have young people’s mental health front and centre, including building on the £7m investment in young people’s crisis care, developing more services in the community and in people’s homes to avoid hospital admissions, and working with local authorities.”

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from → rare conditions

Purple Tuesday: What Needs To Change To Make The Online World Accessible?

November 13, 2018
by

This is a guest post by Anthony Tattum, published with thanks.

Over recent years, organisations have made a commitment and a conscious effort to be more inclusive. By doing that, they have become more accessible; whether it’s by installing gender neutral toilets, implementing audio descriptions in the cinema or employing members of staff dedicated to assisting those who need help, however, there is still a long way to go and with so much of our lives being online, this world needs to be accessible too.

 

Today marks Purple Tuesday, the UK’s first accessible shopping day, established to recognise the importance and needs of disabled consumers and promote inclusive shopping. According to disability organisation, Purple, nearly one in every five people in the UK has a disability or impairment, and over half of households have a connection to someone with a disability. Their collective spending power – the Purple Pound – is worth £249 billion to the UK economy but in 2016, inaccessible websites and apps accounted for an estimated £11.75bn in lost revenue in the UK alone; however less than 10% of companies have a dedicated strategy for targeting disabled customers.

 

While organisations have focussed on the bricks and mortar; the physical accessibility of ramps, toilets and lifts, their websites – are actually not always that accessible to a lot of people.

 

I recently presented the Birmingham Sight Loss Council, which bought to my attention just how much more could be done and as a marketing communications agency, we need to be the ones to do it; to instil into our clients and the websites and campaigns we develop that they have to be accessible for everyone.

 

Josh Feehan, Engagement Manager at Birmingham Sight Loss council told me that as a young man, he likes to have a bet on the football but he’s unable to because none of the apps for the betting companies are accessible. Straight away they’re losing out on his money because of the way they’ve designed their applications.

He also informed me that signing up to a website can be difficult and off-putting. While he understands that websites need to take your details, he is unable to use the captcha tool which checks whether you’re a robot or not. There is an audio captcha option, but Josh says it either sounds like a slurry drunk person – really unclear or it’s so fast, it’s hard to remember what they said, so he ends up giving up.

Due to the design of a website, so many companies who only have an online presence are missing out on a whole consumer group. While like anyone else – disability or no disability, some people prefer to shop online and others prefer to go physically into a shop, but according to Josh, clothes shopping online is difficult and offers really poor descriptions. He knows he could save a lot more money if he shopped online but doesn’t feel confident in what he’s buying and is also nervous about the returns process. This is surprising as you would have thought that the advancements in technology would have brought convenience and safety to people and particularly people who have disabilities, so it’s a real shame that this is not the case.

When building a website or designing a campaign, companies and the agencies they employ need to think about these principles from the start and ask themselves, ‘can everyone use this?’ It needs to be thought about from day one, in the planning stages rather than retrospectively trying to fit around it as that won’t work. Any good business should understand the benefit of including disabled customers and not make it harder for them to find work, spend money online and in store, and enjoy a drink or meal out. Like with anything else, good service and a good user experience earns loyalty and people will keep going back.

There are some simple things that companies can do to improve their website’s accessibility and the Thomas Pocklington Trust’s check list is the following:

  1. Does the keyboard provide access to navigation, in particular the tab, arrow, and enter keys without the use of a mouse?
  2. Using the keyboard for navigation, does the cursor move in a logical flow or order?
  3. Do all elements (links, radio buttons, text boxes, and drop down menus) work when selected?
  4. Is ALT text provided for all non-text elements?
  5. Are captions provided for multimedia elements?
  6. What is the colour contrast like?
  7. How easy is it to find contact details and address or location?
  8. How easy is it to find upcoming events?

Not only does having an accessible website benefit a wider audience of people, it also benefits you as a company, as it increases your audience reach, it demonstrates your dedication to social responsibility and it improves SEO. Your site will have lower bounce rates, higher numbers of conversions and less negative feedback as it offers a better experience to a greater number of people, in turn this will increase your brand’s reputation.

So make sure you’re not excluding a percentage of the population from fully experiencing your brand through your website and make the most of that purple pound – not only because it’s good for business but because it’s the right thing to do.

 

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Claimant, 18, With Quadriplegia Couldn’t Get UC Without Sick Note

November 13, 2018
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Link for those who can’t see the embed.

Our editor has close friends with quadriplegia. She knows its severity. We ask you to share this post as far and wide as possible.

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from → disability political policies, mainstream madness, politics

Capita Asked Cancer Mum To Sign “Death Warrant” Stating She Has Six Months To Live

November 12, 2018
by

A mother-of-two with terminal cancer says she has been told to sign a form stating she has six months to live or risk losing her benefits.

Lynette Mchendry said this would be like “signing her death warrant”, as doctors have no idea how long she could survive.

The 40-year-old is one of more than 100,000 people in Northern Ireland being reassessed for Personal Independence Payments (PIP).

She said the request was “degrading”.

“There was no way I was prepared to get that signed,” the County Antrim woman told BBC News NI. “It’s like signing your death warrant.

“Instead of seeing how they can support you to live an independent life in the time you have, I believe I will never be entitled to it until I’m on my death bed.”

The former civil servant, from County Antrim, was diagnosed three years ago and previously received Disability Living Allowance (DLA), which has been replaced by PIP.

The form she refers to is known as the DS 1500, which can be obtained by applicants from their doctor or consultant.

The Department for Communities, which oversees PIP payments, said that even if the DS 1500 is not provided, the applicant’s case can still be considered under special rules if they meet certain criteria.

But it added that it could not comment on individual cases.

Mrs Mchendry’s payments are continuing while her assessments are under way.

Life with cancer

Applicants to PIP must first fill out a form detailing how they are affected by their disability.

To assess the level of help needed, an independent health professional either invites applicants to a meeting – at home or at an assessment centre – or asks a health or social care worker for information.

During the meeting, applicants are asked questions about their life is affected by their condition, and their ability to carry out day-to-day activities.

What is PIP?

PIP benefit is replacing Disability Living Allowance (DLA) as part of a wider reform of UK welfare for people aged between 16 and 64.

The payment is made to those who have a disability or long-term illness, with the amount based on how the condition impacts someone’s life.

The weekly rate for the daily living part of PIP ranges from £57.30 to £85.60, while those given the mobility part can take home between £22.65 and £59.75 more.

Latest published statistics for PIP show that from July 2016 till May 2018, 65% of claims in Northern Ireland were successful.

During Mrs Mchendry’s interview assessment, she said she was asked whether she could feed herself and use the toilet unaided.

“There’s some days that I can’t get out of bed,” she said. “Whenever I’m on chemo, I have a syringe driver to keep the sickness down.”

“It’s a struggle, but until the stage when I can’t feed myself and can’t go the toilet myself, I want to maintain my dignity.”

She said that Capita, the benefit assessment provider, now requires a second assessment.

“Having completed a very lengthy application form with my full medical history and medication, followed by a 90-minute interview, I am bewildered at how they need more information,” said Mrs McHendry.

The second assessment had been scheduled for last month, but she missed the appointment after confusing the dates.

“My memory is not what it used to be. My IQ isn’t what it used to be since the chemo. I held my hands up and said: ‘It’s my fault.'”

Terminal illness candidates

Someone with a health condition is not automatically entitled to PIP payments, except in cases of terminal illness.

“PIP arrangements recognise the particular difficulties faced by people who only have a short time to live,” said a Department of Communities spokesperson.

Similar to other benefits, a person is regarded as terminally ill if they suffer from a progressive disease and death can be expected within six months.

Claimants deemed as having a terminal illness do not have to complete a standard PIP form and are guaranteed a £85.60 weekly enhanced rate of payment.

Nearly all also receive the enhanced rate of mobility, resulting in a total of £145.35 a week, the spokesperson added.

Having missed the appointment, Mrs Mchendry was told she was at risk of losing her payments.

Since the BBC contacted the Department of Communities, however, the appointment has been rescheduled, although its date has not been confirmed.

One mum’s cancer story

In 2015, Lynette Mchendry had a pain in her breast. Her GP referred her to a hospital, where she was diagnosed with cancer on her right breast.

Eight weeks later, she was diagnosed with breast cancer on her left breast.

She underwent a double mastectomy.

Then she was dealt with another diagnosis: Her cancer had spread to her brain.

She now lives with stage four cancer.

“There’s no cure for stage four unfortunately,” she said.

“The statistics and prognosis for having cancer spread to the brain is actually very low. I have defied the odds because I’m here three years later.”

‘Making milestones’

Despite finding a tumour on the back of her head, Mrs Mchendry was determined to return to work. But when she went for her three-month check-up, the doctors discovered another tumour.

“At that stage I realised that this has changed my life,” she said.

“I had to give up work, applied for ill-health retirement at 38. I then had to give up my driver’s licence.

“I have to depend on people. I have to get people to take me everywhere, to take my kids places or to take me to hospital appointments.”

When she was first diagnosed with cancer, she applied for the the Disability Living Allowance (DLA). She had received these payments until September, when she was told she needed to switch to the PIP system.

Mrs Mchendry said that the benefits helped to pay for a car, oxygen therapy and health supplements.

While she is determined to fight to secure the PIP payments, she said the biggest battle is giving her husband and two sons a normal life.

“I just keep setting myself milestones. I have seen my two kids go from primary school to secondary school,” she said.

“I’ve seen my 40th birthday and I’ll just keep continuing to make my milestones for myself until I can’t.”

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from → disability political policies, politics

Bake Off’s Briony Says Viewers Took Three Weeks To Notice Her Disability

November 12, 2018
by

Briony Williams was one of 12 contestants who battled it out to become Britain’s best amateur baker on this year’s The Great British Bake Off.

During her time on the Channel 4 show, she won praise for her breads, cakes and desserts – even winning the coveted title of star baker during pastry week.

She made it as far as the semi-final – but on social media, she gained praise for a different reason.

Briony, 33, has a disability – her left hand stops at the wrist.

At no point did the show mention her disability. In fact, it took about three episodes for viewers to realise.

“People would tweet, ‘I’m sure Briony had a hand last week’,” she says.

It turns out this was a conscious decision between Briony and Channel 4.

“I specified early on that I didn’t want them to make a big deal out of it because I just wanted to see how people would view it,” she says.

And the response was positive.

Sarah Saville tweeted: “Literally burst into tears seeing @brionymaybakes in the #GBBO tent because I’ve realised I’d never seen anyone with a little hand like me on TV before.”

At first glance, some may think Briony would struggle in the Bake Off tent – juggling bowls and utensils, slicing and kneading – all under the watchful eye of judges Paul Hollywood and Prue Leith.

But Bristol-born Briony never let what she calls her ‘little hand’ stop her from getting stuck in.

She turned down the offer of using special equipment, saying she wanted to be treated the same as everyone else.

‘It’s not that I’m embarrassed about it or ashamed of it in any way,” she says. “I want to be there on my own merit and I don’t want people to think that I’m getting special treatment.

“It was almost kind of trying to prove that just because you’ve got a disability, you can do just as well as anyone else.”

Even when her husband Steve suggested she ask for help during the spice-themed week, when she had to use string to create a biscuit chandelier, Briony used her resources to her advantage.

“I just did it with a stapler,” she says. “And everyone was like, ‘Oh, that’s a good idea’. You just find a way around it.”

Growing up, Briony’s family encouraged that resourceful streak.

“My mum always had the approach with me – if you can’t do something, just figure a way out. I’ve never looked at it like it was any kind of disadvantage, I just had my own way of doing things,” she says.

Briony’s baking career began in 2013, when she took several months off work for what was later diagnosed as Polycystic ovarian syndrome (PCOS).

A colleague suggested she try baking as a way to keep her motivated and learn a new skill. Briony was up for the challenge.

“I’m not very good at not doing anything,” she says.

Briony refined her skills by watching YouTube tutorials, finding clever ways to get around any obstacles in the kitchen.

Briony’s kitchen hacks

Don’t be a martyr

If you’re kneading dough: “You don’t have to be a martyr and knead on a worktop if that’s not possible. If you’ve got a stand mixer I would recommend you use that because it will do the kneading for you.

“That doesn’t mean you’re any less of a baker, it just means that you’re using equipment.”

Grab yourself a marble rolling pin

Using a marble rolling pin is very useful when you want to roll pastry very thinly.

“They’re so heavy that they do a lot of the work for you. You have a lot more control over what you’re doing because you can use one hand to do it. They sound really expensive, but they’re not.”

The bottle trick (really useful for separating egg whites)

Crack an egg into a mug. Then, using an empty plastic bottle, squeeze the air out and hold it over the yolk.

“When you let the air back in, it sucks the yolk back into the bottle and then you’re left with the egg white.”

This year, 2018, has been a big year for disability representation in the mainstream media.

Comedian Lost Voice Guy, also known as Lee Ridley, won Britain’s Got Talent. Due to his cerebral palsy he uses a talking iPad app to speak, similar to the equipment scientist Professor Stephen Hawking also used.

And Paralympian Lauren Steadman became the second disabled contestant to feature on Strictly Come Dancing.

So maybe we’re at a turning point in the way disability is represented on television.

By appearing on The Great British Bake Off, Briony proved to herself, and the public, that with a little imagination and a few hacks, you can achieve anything.

But she’s clear about one thing relating to her disability: “It’s a part of me, not all of me.”

And in case you were wondering, this year’s competition was won by scientist, Rahul Mandal.

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from → Famously DisAbled, Fun Stuff, progress

The Triple Cripples

November 12, 2018
by

Vloggers the ‘Triple Cripples’ are fighting discrimination and trying to “take back” the word “cripple”.

Nigerian Olajumoke ‘Jay’ Abdullahi has polio and Kym Oliver has multiple sclerosis, they say they are discriminated against because they are black women with disabilities.

Kym told BBC Minute people say to her she’s “just come to the country to abuse the system”.

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from → Fellow Bloggers, Fun Stuff

Still No Idea- New Play By Eastenders’ Donna Actress Lisa Hammond

November 9, 2018
by

Lisa Hammond- Donna from Eastenders to most of us- is currently starring in a new play called Still No Idea. The Guardian have reviewed it.

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from → Famously DisAbled, Fun Stuff

One In Ten Rental Homes Advertised As Excluding Benefit Claimants

November 9, 2018
by

At least one in 10 rental properties in England could be being unlawfully advertised by explicitly discriminating against people on housing benefit, housing charities have said.

Analysis of around 86,000 letting agents’ adverts on the property website Zoopla by the homeless charity Shelter and the National Housing Federation (a trade association for social housing providers) in England found 8,710 posts that ruled out tenants on housing benefit.

Thousands of lettings agents and landlords who reject housing benefit claimants could be in breach of equality laws after a single mother won compensation for sex discrimination from a lettings agency that refused to consider her as a tenant, in a landmark case in February.

The analysis by the two housing organisations found that discrimination was widespread in England. Nearly 60% of adverts in north Cumbria excluded potential tenants on housing benefits. A quarter of adverts in Gloucester, Lincoln, Halifax, Worthing, Oldham and Rochdale said “no DSS”, referring to the Department of Social Security, now called the Department for Work and Pensions.

Michelle Hunte, 36, who experienced discrimination after she and her family were made homeless in 2016, said: “I couldn’t find anywhere to live, so ended up in a horrible B&B with only a single bed for myself, my husband and our one-year-old child, who is disabled. There was no space for a cot, it was dirty and there were no cooking facilities. There was nowhere for my other children to sleep, so they had to stay with different family and friends.

“Eventually, I found this home through Shepherd’s Bush Housing Association, who were the only landlords who would accept someone on benefits. They really supported me and gave me a long tenancy. I’ve never missed a rent payment before and I’ve looked after every home I’ve lived in really well. What am I supposed to do? This kind of discrimination has to stop.”

Polly Neate, the chief executive of Shelter England, said: “It’s staggering to see this discrimination laid out in black and white – and brazenly enforced by letting agents, landlords and online property websites. ‘No DSS’ is outdated, offensive and causing misery for thousands.

“Not only is ‘No DSS’ grossly unfair, it is likely to be unlawful because it overwhelmingly affects women and disabled people. That’s why we need the lettings industry to stop blaming each other, accept its role in this shocking practice and clean up its act.”

Kate Henderson, the chief executive of the NHF, which represents social landlords to around 6 million people, said: “Many housing associations were created in the 50s and 60s in reaction to discrimination and racism from private landlords who wouldn’t house migrants, and said ‘No Irish, No Blacks, No Dogs.’ Today’s discrimination is hardly any different and we refuse to turn a blind eye.”

A spokesman for Zoopla said: “Zoopla supports the recommendations of the National Landlords Association and the Residents Landlords Association, which have advocated that landlords do not impose blanket bans against tenants on benefits.

“Zoopla is aware of a small number of rental listings on its websites that fit into this category and Zoopla will write to all of its member agents to recommend that they follow the NLA and RLA guidance.”

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from → disability political policies, mainstream madness, politics

Tesco Creates Larger Nappies For Disabled Children In Response To Campaign

November 9, 2018
by

Parents of children with disabilities can now buy larger-size nappies for their children thanks to the successful campaign of a mum in need.

Laura Rutherford found it hard to find nappies for her four-year-old son Brody who has global development delay, epilepsy, autism and hypermobility syndrome. The mum petitioned supermarkets to sell or make larger nappies for children with additional support needs, and Tesco responded. 

The supermarket worked with Rutherford to create these nappies, which include a wetness indicator and double strength fixing tapes to help with a secure fit on a larger child. The ‘Tesco Health Junior Nappies’ cater for kids whose disability means they continue to need nappies and have outgrown regular sizes.

“When you have a baby one of the many things you don’t expect to use indefinitely is nappies,” said Rutherford. ”You look in to the not so distant future and envisage the ‘joys’ of potty training and eventually a nappy-free life. For parents of children with disabilities it can be very different. 

“There are thousands of children in the UK like Brody, older than ‘typical’ children, who are not potty trained and require bigger nappies. I felt like something needed to be done.”

After setting up the change.org petition – and getting more than 18,000 signatures – Rutherford was overwhelmed with the support from other parents in the same boat.

Families are able to receive nappies through the NHS continence service, but Rutherford said the referral age, eligibility, waiting time and the number of nappies a family receives differs greatly throughout the UK. “Because of this, there is a huge demand for larger nappies in supermarkets,” she said.

Rutherford was over the moon when Tesco got in touch saying they’d like to work with her on designing the new nappies. 

“It was great to work closely with Laura on the design of the nappies and incorporate her thoughts into the final product,” said Sinead Bell, Tesco category director for baby, beauty and toiletries. “We hope this is a little help to Laura and Brody and other families in the same position.”

They nappies are available in Tesco stores now and a pack of 20 is priced at £4.50.

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from → campaigns, progress, special parents

Japan’s Disability Shame

November 9, 2018
by

When the curtain rises on the 2020 Tokyo Paralympic Games, Japan’s most talented disabled athletes will get their chance to shine on the international stage.

But what fans in the stadiums won’t see is Japan’s troubled history of caring for people with disabilities.

From the 1940s to 1996, Japan‘s government sterilised people with a mental illness or disability because it deemed them “inferior”.

The victims of this Eugenic Protection Law kept silent for decades but are now speaking out and demanding an apology and compensation.

However, the attitudes behind this law still linger today. A belief that all disabled people should be euthanised led to a stabbing spree at a disabled care home in 2016. It was Japan’s worst mass killing since world war two.

The parents of the murdered have kept silent, a sign of the shame some in Japan’s society still feel towards people with disabilities.

The Japanese government has been making efforts to improve the lives of people with disabilities by raising employment quotas.

But authorities did not even make their own target, recently admitting they had inflated the number of disabled people employed in 27 government ministries and agencies. In reality, they had only hired half the number of disabled people.

101 East meets the people paying the price for the country’s pursuit of perfection.

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from → international

Chinese School For VI Pupils

November 8, 2018
by

 Deep in the polluted flatlands of Hebei Province in northern China, Mengjie School for the Blind is home for around 100 visually impaired students from rural regions.

“I am determined and confident that I can provide blind people with the skills they need to enter society. They don’t need to be thought of as a burden, and indeed they can become the pillars of the family,” says Mu Mengjie, who founded the school in 1999.

The World Health Organization estimates that there are 75 million visually impaired people in China, 8 million of whom are completely blind.

Outside of major urban centres on the country’s prosperous east coast, most schools are ill-prepared to provide for students like these, and those that do enter the classroom often attend special schools isolated from the rest of society.

The issue is particularly pronounced in rural areas. A chronic lack of infrastructural resources means many visually impaired children remain at home with little to no schooling.

In this context, Mu’s school is an anomaly. It offers a free education and accommodation for disabled children whose families struggle to provide for them.

“At the beginning, the students didn’t even know how to use chopsticks, we’ve come a long way since the school started,” says Mu Lifei, a teacher at the school.

“When they first arrive it can be difficult to build a relationship. Their parents often only provide for their very basic needs and at first, they pull away from us.”

The school has struggled to find qualified teachers willing to live and work far away from major cities, but a close network of teachers and family members have come forward to help the students.

For many of the older students, the school provides vocational training in massage.

Mu claims that over 300 students have graduated from the school to go on and find work. Employment opportunities are extremely limited outside of massage, but Mu believes the financial independence has made a real difference in graduating students’ lives.

“Many of the parents say they regret only finding out about the school so late. They never thought their blind children could earn their own money – sometimes even more than normal people.”

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from → international

Cured- A Play By Laurence Clark

November 8, 2018
by

A link, if you can’t see the embed.

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from → publicity

Call The Midwife’s Sarah Gordy Becomes First Woman With Down’s Syndrome To Be Made An MBE

November 7, 2018
by

Same Difference is thrilled to report that actress Sarah Gordy today became the first woman with Downs Syndrome to be made an MBE.

She received this honour for her services to the arts and to people with disabilities.

Gordy told the BBC it was “just fantastic” to return to the palace, having previously visited as a celebrity ambassador for the charity Mencap.

She added: “I’d like to inspire others and empower others to believe in themselves, especially people with Down’s syndrome.”

Our editor loved Sarah Gordy’s episode of Call The Midwife a few years ago. She also saw her in a highly recommended play, Jellyfish, earlier this year.

Same Difference remains inspired by her achievements, which include playing the role of a non disabled character.

This honour is very well deserved, and we wish Sarah Gordy every success in life and her acting career.

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from → Famously DisAbled, progress

Wonder Woman: Deaf Stuntwoman Kitty O’Neil Dies At 72

November 7, 2018
by

Kitty O’Neil, a stuntwoman who was Lynda Carter’s stunt double on 1970s TV series Wonder Woman, has died in South Dakota at the age of 72.

O’Neil, who lost her hearing when she was five months old, also doubled for Lindsay Wagner on The Bionic Woman.

Her other credits included Smokey and the Bandit II and The Blues Brothers.

O’Neil’s success as a stuntwoman led her into the world of speed racing and she set a land-speed record for women in 1976 – which still stands today.

She got into the record books by travelling at an average of 512 mph in a rocket-powered vehicle called The Motivator.

O’Neil’s success was such she spawned her own Barbie doll. She was also the first woman to join the Hollywood stunt agency Stunts Unlimited.

Stockard Channing played her in a 1979 TV movie called Silent Victory: The Kitty O’Neil Story, with O’Neil herself playing her stunt double.

O’Neil’s career was not without mishap. While filming a TV show in 1978, she flipped a rocket-powered Corvette while trying to set a quarter-mile speed record in the Mojave Desert.

After retiring in the 1980s, she moved to Eureka, South Dakota, where she died of pneumonia on Friday.

In a 2015 interview, she said it had “felt good” to be one of Hollywood’s stuntwomen, and that she was “not afraid of anything”.

Those paying tribute following her death included Oscar-winning deaf actress Marlee Matlin, who praised her for “breaking ground in stuntwork and racing“.

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from → Famously DisAbled, tributes

Esther McVey Misleads MPs About Mind’s Opinions On UC

November 7, 2018
by

Here’s the link, for those who can’t see the embed.

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from → disability political policies, politics

Having Disabled People In Ads Is Just The Start

November 7, 2018
by

A link for those who can’t see the embed.

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from → Fun Stuff

MPs Condemn Sanctioning Of Sick And Disabled Claimants

November 6, 2018
by

With many thanks to Benefits And Work.

The House of Commons Work and Pensions Committee yesterday condemned the sanctions regime being used against sick and disabled people as ‘harmful and counterproductive’. They have also called the refusal of the government to carry out any evaluation of the effects of the current sanctions regime “unacceptable.”

One of the main recommendations in the committee’s report, ‘Benefit Sanctions’, is that the DWP immediately stop sanctioning sick and disabled claimants:

“Of all the evidence we received, none was more compelling than that against the imposition of conditionality and sanctions on people with a disability or health condition. It does not work. Worse, it is harmful and counterproductive. We recommend that the Government immediately stop imposing conditionality and sanctions on anyone found to have limited capability for work, or who presents a valid doctor’s note (Fit Note) stating that they are unable to work, including those who present such a note while waiting for a Work Capability Assessment. Instead, it should work with experts to develop a programme of voluntary employment support.”

Warning that sanctions rates are higher under UC than other benefits, the committee also demanded that the government urgently evaluate the effects of sanctions:

“The failure to evaluate the 2012 reforms is unacceptable. It is time for the Government urgently to evaluate the effectiveness of reforms to welfare conditionality and sanctions introduced since 2012, including an assessment of sanctions’ impact on people’s financial and personal well-being. Furthermore, until the Government can point to robust evidence that longer sanctions are more effective, higher level sanctions should be reduced to two, four and six months for first, second and subsequent failures to comply.”

Another major recommendation by the committee was the reduction of the rate at which hardship payments have to be repaid by claimants:

“Hardship payments are made to those who would otherwise be left with nothing when sanctioned. But recovering that payment at a rate of 40% of someone’s standard allowance imposes further significant hardship. It is neither necessary for the Government—as it appears not to be financially motivated to recover the money—nor affordable for those who have been recognised as at risk of extreme poverty. Our final recommendation is therefore that the Department issues revised guidance to all work coaches to ensure hardship repayments are set at a rate that is affordable for the claimant, with the default being 5% of their standard allowance.”

Frank Field, chair of the committee, said:

“We have heard stories of terrible and unnecessary hardship from people who’ve been sanctioned. They were left bewildered and driven to despair at becoming, often with their children, the victims of a sanctions regime that is at times so counter-productive it just seems pointlessly cruel.

“While none of them told us that there should be no benefit sanctions at all, it can only be right for the Government to take a long hard look at what is going on. If their stories were rare it would be unacceptable, but the Government has no idea how many more people out there are suffering in similar circumstances. In fact, it has kept itself in the dark about any of the impacts of the major reforms to sanctions introduced since 2012.

“The time is long overdue for the Government to assess the evidence and then have the courage of its reform convictions to say, where it is right to do so, ’this policy is not achieving its aims, it is not working, and the cost is too high: We will change it.”

You can download the full ‘Benefits Sanctions’ report from this page.

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from → disability political policies, politics

Hollyoaks Plans Special Disability Episode To Air In New Year

November 6, 2018
by

Hollyoaks has announced plans to air a special episode that celebrates the diversity of the village.

The ground-breaking episode will air in the new year, and will see Mandy and Darren face the most difficult decision of their lives regarding the health of their unborn baby.

This episode will play out as the village holds a charity event celebrating the diversity of the soap’s many characters with disabilities and additional needs.

“Hollyoaks has grown into one of the most diverse shows on television and our disability visibility reflects that,” executive producer Bryan Kirkwood said.

“The Hollyoaks team’s presentation at Channel 4’s Disability Conference was a celebration of all the trailblazing work that goes on behind the scenes and on-screen. We have two exceptionally talented leading actors with disabilities or additional needs in Amy Conachan, who is a wheelchair user, and Talia Grant, who has autism.

“It’s important to us that both Amy and Talia star in huge Hollyoaks stories rather than fade into the background. The heightened world of Hollyoaks is an equal opportunities disaster zone where everyone can fall in love or get caught up in the latest stunt.”

Amy Conachan plays Courtney Campbell in the soap, while Talia Grant joined as Brooke Hathaway earlier this year.

Speaking of the special episode, archivist Laura Halligan teased what audiences can expect, including a real-life signing choir – which Oscar Osborne (Noah Holdsworth) is a part of – as well as appearances from a number of charities who have advised on the script and will “play a role” in the event too.

“Brooke plays a pivotal role in reassuring Oscar about this performance, giving him the confidence he needs to shine,” she explained.

“The episode is as heart breaking as it is heart-warming as we explore the hardships and joys of living with a disability, whilst celebrating the diversity of our cast.”

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from → Famously DisAbled, Fun Stuff, progress

Beatboxing May Be Used As A Form Of Speech Therapy

November 6, 2018
by

Beatboxing has long been associated with the hip hop world. But creating beats is not only a form of self-expression; it could help to unlock the full potential behind the human voice, especially for those with a speech impediment.

We’re exploring how a music class for disabled children at The Lavelle School for the Blind in New York City uses beatboxing as an effective form of speech therapy.

James Kim is the executive director of Bridging Education and Art Together (BEAT) and one of the masterminds behind Beat Rockers, a beatboxing and self-expression programme aimed at young people in New York City.

Joining James is a professor of cognitive neuroscience, Sophie Scott who has studied the ways beatboxing challenges what we know about the human voice to examine just how helpful it can be.

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from → original ideas

Universal Credit Managed Migration Plans Overhauled As DWP Bows To Warnings

November 6, 2018
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The government has overhauled its proposals for transferring people on to universal credit after its own expert advisers issued a stark warning that it was not doing enough to stop thousands of vulnerable claimants being put at risk of hardship.

In a bid to address concerns raised by campaigners, claimants and MPs, the work and pensions secretary, Esther McVey, announced a raft of changes on Monday to plans governing the transfer of 3 million people on to the new benefit.

The so-called “managed migration” of universal credit claimants has become a major political concern, with two former prime ministers, John Major and Gordon Brown, joining MPs in warning that mishandling the process could trigger a poll tax-style revolt.

Problems with universal credit, especially the long wait for a first benefit payment, have been identified as a key cause of hardship for claimants, with many forced to turn to food banks to survive and tens of thousands running up rent arrears.

McVey’s announcement followed a report by the government’s social security advisory committee (SSAC) that warned of “significant concerns” that the universal credit plans were rushed, too complex and placed too much risk on claimants. MPs will debate the migration regulations in the next few weeks.

The Department for Work and Pensions (DWP) has now said it accepts or will look again at 11 of the report’s 12 recommendations for change. McVey told the Commons on Monday: “We will take a measured approach to delivering managed migration, taking our time to get it right and working with claimants to co-design it.”

The DWP has announced a number of measures as part of £1bn package announced in the budget to help claimants’ transition to universal credit, including providing two weeks’ additional benefit to unemployed claimants to help them manage the five-week wait for a first UC payment.

The SSAC report followed a consultation in which it received a record 455 responses, including more than 300 from individual claimants or their carers. It noted that it had been “particularly struck by the degree of anxiety” about managed migration conveyed by this group.

Sir Ian Diamond, the SSAC chair, said he was pleased that the government had largely accepted the committee’s advice, but said much detail still had to be worked out. He said he was disappointed that the DWP had rejected a key recommendation to abandon plans to force all existing benefit claimants to make a claim for universal credit before they could be migrated to it. The DWP said making a new claim was essential to ensure all data was up to date.

Campaigners, who have lobbied ministers hard to demand changes in recent months, welcomed McVey’s announcement, but said the measures did not go far enough to limit the risk that thousands of vulnerable claimants could be left without benefit income.

Frank Field, who chairs the Commons work and pensions select committee, said: ”[McVey] could not ignore the swell of expert voices warning that the government’s approach to moving vulnerable people to universal credit could end in disaster and destitution. The department deserves credit for listening, but its response fails to provide in full the necessary safeguards for claimants.”

Alison Garnham, the chief executive of Child Poverty Action Group, said there was some good news in the revised regulations, but it was disappointing that the government rejected the argument for moving people on existing benefits over to universal credit automatically.

Phillip Anderson, the head of policy at the MS Society, said: “The stop-start approach to managed migration remains a real concern. The government has said they will provide a one-off sum to help people manage, but this will not be enough. The best and only solution is for claimants to remain on their existing benefits until a universal credit claim is in place.”

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from → disability political policies, politics, progress

People With LD Likely To Die 20 Years Earlier Says Report

November 5, 2018
by

Two out of five people with learning disabilities are not diagnosed in childhood and, even if they are, they will likely die before they collect their pension, according to a study commissioned by the NHS.

Researchers from the UCL Institute of Health Equity (IHE) found that people with learning disabilities will die 15 to 20 years sooner on average than the general population. That amounts to 1,200 people each year, a figure which chimes with the government’s own estimate. The IHE says it is not a consequence of the underlying condition that led to the learning disability but because they are being “catastrophically” failed by the government.

Prof Michael Marmot, IHE director, said: “This is a direct result of a political choice that destines this vulnerable group to experience some of the worst of what society has to offer: low incomes, no work, poor housing, social isolation and loneliness, bullying and abuse.

“A staggering 40% of people with learning difficulties aren’t even diagnosed in childhood. This is an avoidable sign of a society failing to be fair and supportive to its most vulnerable members. We need to change this. The time to act is now.”

The health equality thinktank cites statistics that show children with learning disabilities are at increased risk of mental health conditions, including depression, with half of the increased risk of mental health difficulties attributable to poverty, poor housing, discrimination and bullying.

The IHE says it sounded the alarm bell a year ago that government policy was not working, having documented a slowing down in life expectancy, and called for research into a potential link with austerity, but action has not been taken.

It wants the government to focus on tackling poverty, poor housing, discrimination and bullying, and aim to increase employment levels from the current rate of 5.7% to at least 22% in the best performing regions, although it says 48% could be achievable.

It highlighted the example of Walgreens pharmacy chain in the US, which actively recruits people with learning disabilities in their distribution centres. It found them to be equally productive, have less accidents and to have helped reduce staff turnover at sites by up to 50%.

A government spokeswoman said: “We recognise the need to tackle the unacceptable inequalities faced by people with learning disabilities and autism.

“Improving the lives of people with learning disabilities will be a key part of the NHS long-term plan and we will be consulting shortly on mandatory awareness training for health and care staff to help end unacceptable differences in life expectancy.

“Funding for children with special educational needs and disabilities is the highest on record and we are working with employers to support more people with learning disabilities into work.”

A spokeswoman for NHS England said the report was commissioned “precisely to draw attention to the wide range of factors which need tackling if, as a society, we are to give everyone with a learning disability the opportunity to lead a long and fulfilling life”.

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from → polls

SignKid: The Deaf Hip Hop Artist

November 5, 2018
by

Kevin Walker became deaf after contracting meningitis as a child and now he’s a music composer.

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from → Famously DisAbled, Fun Stuff

Call For A Minister For Disabled Children

November 5, 2018
by

Same Difference fully supports this campaign.

Parents of disabled children are being let down by a support system that isn’t working properly.

41% of parents of disabled children aged zero to five were not offered any emotional support during the diagnosis journey for their child.

We need leadership from the Government. A dedicated Minister can strengthen how Government and services like the NHS work together to make sure families receive the right support.

Now is the time to make a difference.

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from → disability political policies, politics

London Hospital Drops Chemotherapy Due To Staff Shortages

November 5, 2018
by

One of the biggest NHS trusts is to stop providing chemotherapy at one of its hospitals because it has too few specialist cancer nurses to staff the unit.

The Cedar Centre at King George hospital in Ilford, east London, will cease provision from 12 November because four of its nurses have quit and two others have gone on maternity leave.

It is thought to be the first time the NHS’s widespread staffing problems have led to a specialist cancer unit no longer being able to offer a vital service such as chemotherapy.

More than 500 patients a year received their cancer treatment there, and in future patients will have to go to Queen’s hospital in nearby Romford instead.

Macmillan Cancer Support said the move was “hugely concerning” and a stark example of the “extreme workforce pressure” at NHS cancer services, which are facing rising demand while recruitment and retention of nurses gets harder.

Moira Fraser-Pearce, Macmillan’s director of policy, said: “It is hugely concerning if a hospital is not able to recruit enough cancer nurse specialists to feel it can safely provide patients with the treatment they need.”

Tom Sandford, the Royal College of Nursing’s England director, said: “The loss of the chemotherapy service at the Cedar Centre is a serious blow to patient care at a time when the government’s referral target for urgent cancer treatment has not been met for five years.

“The fact a specialist unit such as this has been forced to close its doors to people needing chemotherapy is the starkest evidence yet that the nurse staffing crisis is jeopardising safe patient care, with almost 42,000 nurse vacancies in England alone.”

Barking, Havering and Redbridge University hospitals NHS trust, which runs both hospitals, said it had been planning to centralise chemotherapy services in Romford, and had accelerated the move when it found it could not replace the four nurses who are leaving. The departures will reduce the number of cancer nurses working across both hospital sites delivering chemotherapy from 19 to 15.

The absence of two nurses on maternity leave will mean 13 will be working at Queen’s, which already has almost 2,000 cancer patients a year.

Chris Bown, the trust’s interim chief executive, said: “Chemotherapy nurses are a specialist group and hard to recruit to.

“Centralising our chemotherapy service at Queen’s hospital is part of our ongoing plans to improve the care and experience of our cancer patients. We’ve brought forward these plans due to staff shortages.”

In January, it emerged that medical chiefs at Churchill hospital in Oxford were considering starting to ration access to chemotherapy for both existing and newly referred cancer patients because it had too few nurses to deliver treatment.

The Cedar Centre has been providing chemotherapy two days a week to what the trust says are patients requiring “less complex treatments” than those who go to Queen’s hospital.

Bown said the centralisation was good for patients because the radiotherapy centre, medical experts in cancer and the pharmacy team were all based at Queens’s.

The Cedar Centre will now be developed as a “living with cancer and beyond health and wellbeing hub, providing a range of support to help patients and their families from their diagnosis through to post-treatment”, Bown said.

Macmillan and Cancer Research UK have warned in recent years about the growing difficulties NHS cancer services are having in recruiting and retaining staff, which has led to patients facing delays in diagnostic testing and treatment.

Macmillan has voiced concern about the number of vacancies for nurses who specialise in treating certain forms of cancer. Sandford said the removal last year of funding for tuition fees and living costs for student nurses was contributing to a worrying outlook.

“Retention rates are also a huge problem as the pressure caused by understaffed workplaces pushes more and more people away from the job they love,” he said.

Shortages of cancer nurses are common, even though more are being employed in the NHS in England. The latest figures from NHS Digital show the total number of nurses and health visitors in England specialising in cancer support rose from 2,869 in June 2016 to 3,096 in June this year.

The number of hospital and community-based doctors working in cancer support fell by 23% over the same two-year period, from 141 to 108.

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from → cancer, nhs

Think Science! Think Disability! Stephen Hawking For The New £50 Note

November 2, 2018
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The Bank of England have opened nominations today for the person who will feature on the new £50 note. They have called their campaign Think Science! and are asking the public to nominate scientists. To feature, the person must be a real person who is no longer alive.

Same Difference was thrilled when we heard this morning that the face of the new £50 note would definitely be a scientist. We didn’t need the brains of Stephen Hawking to figure out who we were going to nominate!

Stephen Hawking himself ticks all the Bank of England’s boxes. He was a real person, a brilliant scientist, and sadly passed away earlier this year.

Same Difference is a disability issues website, so we always think disability representation. Stephen Hawking was, of course, also disabled. So he ticks all our boxes, too.

Our editor has always been inspired by Stephen Hawking. He was easily the most intelligent disabled person of our times, if not of all time. Our editor has worked hard all her life to prove to the world that physically disabled people are just as intelligent as anyone else, and that they can do anything they wish to do, with appropriate support.

If anyone, ever, proved this very point by example, that person was Stephen Hawking.

Same Difference feels certain that making Stephen Hawking the face of the new £50 note would be the best possible tribute to a great scientist. It would also ensure that disability would be represented in a very important area of mainstream society for several years to come.

If you agree, please join Same Difference in nominating Stephen Hawking to be the face of the new £50 note.

 

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from → campaigns, Famously DisAbled, tributes

PIP Assessment Abuse- A Recording

November 2, 2018
by

 

For those who can’t see the above embed.

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from → disability political policies, politics

Medical Cannabis Available On Prescription From Today

November 1, 2018
by

Medicinal cannabis products can now be legally prescribed to some patients across the UK for the first time.

The treatments can be prescribed only by specialist doctors in a limited number of circumstances where other medicines have failed.

The decision to relax the rules on the treatments followed an outcry over two boys with severe epilepsy being denied access to cannabis oil.

But one charity fears access to it will be “much more limited” than expected.

Among those who stand to benefit will be children with rare, severe forms of epilepsy.

Who can receive the treatments?

As of Thursday cannabis-based products can be prescribed, but only by specialist hospital doctors in a small number of cases, and not by GPs.

New NHS guidance for doctors in England says it should be prescribed only when there is clear published evidence of its benefit and other treatment options have been exhausted.

Alfie Dingley and Billy Caldwell, the boys whose cases prompted an outcry over the UK’s rules on medicinal cannabis, will be able to access their treatments, without the need for a special Home Office licence, under the change to the law.

The treatments can be prescribed in cases of

  • Children with rare, severe forms of epilepsy
  • Adults with vomiting or nausea caused by chemotherapy
  • Adults with muscle stiffness caused by multiple sclerosis

If a patient is not already in touch with a specialist doctor they can be referred to one by their GP if the doctor deems this appropriate.

Which treatments will be prescribed?

The Home Office has said the treatments must have been produced for medical use and be regulated.

In practice, experts say this is likely to include pills, capsules and oils, but not smoking cannabis.

Treatments contain varying quantities and ratios of the compounds THC, which makes people feel “high”, and CBD, another compound scientists are investigating for its potential medical benefits.

It will be down to individual hospital trusts to decide how to fund the treatments.

How did we get to this point?

The decision to allow specialist doctors to prescribe medicinal cannabis products follows the high-profile cases of Alfie seven, and Billy, 13.

Both have severe epilepsy which their families say has been markedly improved by cannabis oil treatments that had not been legally available in the UK.

Initially, the Home Office refused requests for a licence for Alfie to use the oil.

Billy’s mother, Charlotte, had cannabis oil that she brought back from Canada confiscated at Heathrow Airport.

Their plight prompted MPs to criticise the “bizarre and cruel” rules over medicinal cannabis.

The boys have since been granted special licences to access their treatments.

The cases prompted Home Secretary Sajid Javid to announce in June that there would be a review of medicinal cannabis.

That review, which came in two parts, concluded there was evidence medicinal cannabis had therapeutic benefits and that doctors should be able to prescribe the products, provided they met safety standards.

In July Mr Javid confirmed that specialists doctors would be able to prescribe cannabis-derived medicinal products.

What were the rules before?

Before today, almost all cannabis-based medicinal products were classed as Schedule One drugs, which means they were judged to have no therapeutic value. Sativex, a treatment containing the cannabis compounds THC and CBD, is one of the few that is already approved.

This meant these products could not be legally prescribed in the UK, and could be accessed only, in rare cases, with a special licence from the Home Office.

Now treatments that meet “appropriate standards” have been reclassified into Schedule Two – those that have a potential medical use.

How have people reacted to the law change?

Dr Michael Bloomfield, from University College London, said the UK’s approach was sensible.

“It’s going to be very hard for doctors to prescribe cannabis-related products to begin with, and I think it’s right that’s the case.

“When we don’t have very strong evidence for any medicine, then it should be hard to prescribe something because we should be prescribing medicines when there’s a very strong evidence base for them.”

But the MS Society said the guidance made access to treatments “much more limited than we were led to believe”.

Genevieve Edwards, from the society, added: “We’re calling on NHS England to revisit this guidance urgently, and engage with neurological experts to ensure people with MS are not left disappointed and unable to access the right treatment for them.”

Is this a step towards recreational legalisation?

The government has been quick to say that this is not a first step towards legalising cannabis.

Last month Canada became only the second country in the world, after Uruguay, to legalise possession and use of recreational cannabis.

“There will be strict controls in place and this is in no way a step towards legalising the recreational use of cannabis,” Home Secretary Sajid Javid has previously said.

An NHS spokeswoman said the change to the law “does not detract from the wider physical and mental health risks and concerns potentially arising from regular recreational cannabis use”.

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from → progress, the law, updates

Spinal Implant Helps Three Paralysed Men Walk Again

November 1, 2018
by

Three paralysed men, who were told they would spend the rest of their lives in a wheelchair, are able to walk again thanks to doctors in Switzerland.

An electrical device inserted around the men’s spines boosted signals from their brains to their legs.

And it also helped damaged nerves in the spinal cord to regrow.

The researchers hope that this unexpected bonus will enable some paralysed people ultimately to regain independent movement.

BBC News has had exclusive access to the patients in the clinical trial, the results of which are published in the journal Nature.

The first patient to be treated was 30-year-old Swiss man David M’zee, who suffered a severe spinal injury seven years ago in a sporting accident.

‘Try the impossible’

David’s doctor said he would never walk again.

However, thanks to an electrical implant developed by a team at École Polytechnique Fédérale de Lausanne (EPFL), he can walk more than half a mile with the implant turned on.

As I strolled with him on a cloudless sunny day in the foothills of the Alps overlooking Lake Geneva, he told me how the ability to walk, albeit for short periods under controlled conditions, had changed his life.

“To me it means a lot. I’m surprised at what we have been able to do. I think you’ve got to try the impossible to make the possible possible. It’s a lot of fun – it feels really good,” he said.

David comes across as an overwhelmingly positive person, but after his injury he had some dark moments.

All attempts at rehabilitation had failed, so he agreed to take part in a trial led by Dr Grégoire Courtine at EPFL.

Dr Courtine recalls David’s determination to succeed.

“I came with my daughter, Charlotte, who was one month old at the time. As we approached David, he looked her in the eye and said, ‘I will walk before you’.

“When Charlotte took her first step she was 14 months old, by which time David was walking by Lake Geneva.

“He said to her, ‘I have beaten you’.”

To Dr Courtine’s surprise, the spinal implant did more than enable David to walk.

“What was completely unexpected was the spinal cord repair that we observed.

“What we observed in animals is that it seems that the nerve fibres are regrowing and reconnecting the brain to the spinal cord,” he said.

David had his implant surgically inserted by one of Switzerland’s leading neurosurgeons, Dr Jocelyn Bloch, from Lausanne University Hospital.

She told me that she was also astonished at David’s improvement.

David can now walk up to eight paces when his implant is turned off and this is the first time that this has been recorded in a chronic spinal injury.

Out of the lab, in the real world, it is hard for David to walk more than a few paces. The signals from the implant soon become uncomfortable and so can’t be used all the time.

The system is also expensive and not reliable enough to be used outside of the laboratory for day-to-day use, so it’s far from a cure.

Restoring movement and hope

But, according to Dr Mark Bacon, executive and scientific director of the charity Spinal Research, it does show that paralysis can be reversed – at least to some degree.

“Whether, in its current form, it is a plausible option for patients, is doubtful,” he said.

“But it demonstrates we have a workable model of what is required to stimulate regeneration and that, ultimately, paralysis is surmountable.”

David is the first of three patients who have benefited from the first wave of the treatment.

Two other men have also managed to walk again, to varying degrees.

Gertan Oskan, a 35-year-old engineer from the Netherlands, was knocked over by a car seven years ago.

His doctors told him on his birthday that he would be paralysed for life. He is now beginning to regain some movement.

Sebastian Tobler, a 48-year-old man from Germany, was a keen cyclist who loved being out in the countryside before he was knocked off his bike.

Now he’s back on a specially adapted bike that is powered mostly by his hands – but also partly by his legs.

The researchers believe that their system will improve and restore some movement to people who had lost all hope of walking again.

They plan to begin larger trials in Europe and the US in three years’ time.

If these go well, the researchers hope the system could become more widely available.

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France Missing Limb Births- National Inquiry Launched

November 1, 2018
by

France has launched a national investigation into the number of babies being born with missing arms or hands – weeks after an initial inquiry closed.

The first investigation began after it emerged more than a dozen children had been born with the condition in clusters in three French regions.

It ended after health authorities failed to identify a common cause.

But now another 11 cases have emerged in the eastern region of Ain, prompting officials to open a fresh inquiry.

The condition is a type of agenesis, where the upper limbs of a foetus fail to form correctly during pregnancy.

It includes entire missing upper limbs, missing forearms and hands, or fingers – but not unrelated medical conditions, such as missing thumbs.

The cases are clustered in the rural Ain area not far from the Swiss border, as well as in Brittany and Loire-Atlantique, two neighbouring regions on the north-west coast.

‘All of France wants to know’

Health Minister Agnès Buzyn had already pledged a further investigation in the wake of the initial report’s lack of explanations, amid continued public concern and widespread media coverage.

Speaking on French television on Wednesday morning, she said the first results from the national inquiry would be published in January, with more to follow by summer.

“I think all of France wants to know,” said Ms Buzyn. “We don’t want to rule anything out. Perhaps it’s do with the environment, or something they ate, or something they drank. Perhaps it’s what they breathed – right now I just don’t know.”

All the cases reported in Ain involve people within a 17km (11 miles) radius of the village of Druillat, leading to speculation about the possible influence of pesticides – which has yet to be proven.

The stories of some affected children were widely covered in the French media in the wake of the first report.

Ryan, now aged eight, is one of the children from the Ain region who is missing a hand.

His parents told French news channel Franceinfo that there had been no hint of a problem on ultrasound scans. Instead they found out when he was born, and doctors were unable to tell them why.

Another affected mother, from Brittany, said she was quizzed by doctors after the birth of her son Leo with a malformed forearm.

They wanted to know about eating habits or any pharmaceuticals of drug use – but again, could not find a cause.

Chair of the scientific committee in Ain’s regional health centre, geneticist Dr Elizabeth Gnansia, said the number of concentrated cases of a rare condition was significant.

“Let’s imagine they are born between 2009 and 2014, which is five years, can you imagine that in a small rural school seven infants are in the same school with a type of amputation of forearm?” she said.

“We don’t need statistics for that. It’s highly significant. It’s 50 times what you expect.”

How the inquiry unfolded

The regional register for birth defects, Remera, had raised concerns about a possible surge in cases in Ain in July, following reports from local doctors. It discovered seven cases clustered close together around Druillat over six years.

But an initial report from Public Health France in October concluded that those cases, between 2009 and 2014, were not significantly higher than the national average.

However, it now says that the 11 new cases it uncovered were all from Ain, covering 15 years since 2000.

Three other cases in Loire-Atlantique and four in Brittany were also looked at. In those cases, the health body acknowledged that the numbers were higher than average – but again, no common cause was found.

Officials concluded that in all three regions, further investigations were not possible without a hypothesis to pursue.

The report also said that monitoring of birth defects was only carried out by a handful of registers, covering just 19% of births in France. That has prompted some fears that the number of cases may be under-reported.

On Tuesday, Public Health France announced that the new cases had been uncovered by a further analysis of hospital databases.

It warned that a comprehensive survey several years after the birth of affected children would be “complex”.

The case has drawn parallels with the Thalidomide scandal, involving a drug often taken by pregnant women to alleviate morning sickness. The link between Thalidomide and limb malformation during pregnancy was only uncovered after years of the drug’s use.

However, no such link between a chemical or pharmaceutical cause has been drawn in France.

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