Atos nurse continues PIP assessment while claimant has ‘grand mal’ epilepsy seizures

A nurse carrying out a disability benefit assessment fired questions at a disabled man’s wife while her husband was in the middle of a severe and prolonged series of epileptic seizures just a few feet away.

Daniel Marshall, from Dorset, had only been able to answer a couple of questions from the Atos nurse before the stress of the personal independence payment (PIP) assessment caused the first of a series of seizures.

Shortly after they began, he started to experience a period of “grand mal” seizures, which caused violent convulsions and led the father-of-two to bite his tongue and begin to bleed from his mouth.

Despite these seizures, the nurse failed to provide any advice or help, according to Daniel’s wife, Sinitta.

After waiting for the grand mal seizures to finish and stepping outside to call her boss for instructions, the nurse came back inside and asked if she could continue with the assessment, warning Sinitta that otherwise her husband would not be awarded any PIP.

She continued to ask questions for up to half an hour, the Marshalls say, even though Sinitta told the nurse that she needed to change her husband’s clothes because he had wet himself.

The assessor was forced to pause a second time when Daniel had another series of grand mal seizures, but then carried on asking Sinitta questions.

Sinitta said: “I was crying my eyes out. I told her he would probably end up in hospital, which he did.

“I told her I had to change him because he had wet himself, but she just kept asking questions. I felt like I was being interrogated.

“She just kept asking how long it would last for and what it would be like after she left.”

After the assessment ended, Daniel had another eight grand mal seizures and was taken to hospital in an ambulance.

Despite the seriousness of the seizures, Daniel says that the nurse failed to mention in her assessment report that she had witnessed them taking place.

He told Disability News Service that the nurse “didn’t even treat me like a human” during the assessment on 22 November.

He said: “It is bad enough to not be able to support your family, but the way she treated me made me feel like I was less than human.”

When he was first assessed for PIP two years ago, following his initial diagnosis with epilepsy, his claim had been rejected, following an Atos assessment.

He said he had had to “fight tooth and nail” to be awarded the standard daily living rate and enhanced mobility rate of PIP after challenging the decision through the Department for Work and Pensions’ mandatory reconsideration process.

He believes that the stress of having to prove the seriousness of his epilepsy – he experiences grand mal, cluster and absence seizures – when he was being reassessed brought on the seizures during the assessment in November.

His wife said she was “really angry and really sad”.

She said: “I am sad for my husband because he has gone through all this.

“I am angry at her because having seen exactly what he was going through, she was still wanting to ask me irrelevant questions.”

She added: “We feel like she may as well have prodded his twitching body with her foot whilst taking notes.”

Even though the nurse awarded Daniel enough points to qualify for the enhanced rate of PIP for both mobility and daily living, he only met the minimum requirement for enhanced daily living by one point.

Despite seeing him wet himself during the first series of grand mal seizures, the nurse still gave him zero points in the incontinence category.

Daniel said he believes that if the assessor had not witnessed his seizures, he would have lost all his entitlement to PIP.

He said: “On a lot of the questions, she wrote down [in the assessment report] the opposite of what she was told.

“She may as well have filled it out herself [without an assessment] and saved me the stress and aggro of going through all the seizures.

“I see so many people struggling to get PIP. I would probably have been one of those people if I had not been ‘fortunate’ enough to have those seizures in front of her.”

DNS has been carrying out a year-long investigation into claims of dishonesty at the heart of the PIP assessment system, and has revealed that complaints about the process rose by nearly 900 per cent in 2016.

Asked if this was an acceptable way for an assessor to behave, whether the case provided further evidence of the problems within the assessment system, and if the department would investigate this case, a DWP spokesman said: “Comment on this specific incident is for our assessment provider.

“I understand no complaint has been made to our provider.”

He added: “We always expect the highest of standards from our independent assessors.”

An Atos spokesman said: “We are absolutely committed to providing every claimant at each stage with a professional and compassionate service.

“We also carry out every assessment in line with the criteria as laid out by the Department for Work and Pensions.

“Following a review of this case, we do not recognise the account that has been provided, and no complaint has been received.”

When asked if Atos was denying that Daniel Marshall had had a series of epileptic seizures during the assessment, and that the assessor had continued with the assessment despite those seizures, the spokesman refused to comment further.

4 January 2018



More than one in eight rejected PIP claims are overturned, DWP figures reveal

More than one in eight of all decisions to reject claims for personal independence payment (PIP) are eventually being overturned, new figures obtained by Disability News Service (DNS) have revealed.

The figures* show that, of all the PIP claims rejected by Department for Work and Pensions (DWP) decision-makers in the year to June 2017, 13 per cent were eventually overturned because the decisions were found to have been wrong.

The statistics raise fresh concerns about the performance of outsourcing companies Atos and Capita, which are set to be paid more than £700 million between them over the first five years of their contracts to assess PIP claimants in England, Scotland and Wales.

Last month, MPs on the Commons work and pensions select committee heard that neither company had ever met contractual quality standards on the assessment reports their staff have written for DWP.

The new statistics were obtained by DNS through a freedom of information request, and have not previously been published.

They show that, between July 2016 and June 2017, eight per cent of rejected PIP claims were overturned at the mandatory reconsideration (MR) stage – where DWP civil servants review decisions, if requested – while another five per cent were not changed at MR but were overturned at a tribunal appeal.

They also show that the proportion of overturned decisions has risen substantially over the last two years, from eight per cent in July 2014-June 2015 (of which three per cent were overturned at MR), to 12 per cent in July 2015-June 2016 (of which five per cent were overturned at MR), and then to 13 per cent in the latest figures.

Previous figures have suggested that about one in every 14 PIP decisions (about seven per cent) was eventually overturned in the claimant’s favour, but the new figures are much higher because they refer only to those PIP claims which were originally rejected by DWP, following an Atos or Capita assessment report.

The true proportion of incorrect decisions is likely to be even higher, because many rejected PIP claimants do not challenge those results, with anecdotal evidence suggesting that many such claimants are discouraged from seeking an MR by civil servants.

The figures were released as the Liberal Democrats’ work and pensions spokesman, Stephen Lloyd, called for an immediate end to private sector involvement in disability benefit assessments.

He said that Atos, Capita, and Maximus – which carries out work capability assessments (WCA) – had “consistently failed to meet the standards set by the government”.

Lloyd told DNS: “These figures are absolutely shocking.

“In any other environment such a constant inability to get assessments right would involve a cancellation of contracts, yet these conglomerates just keep getting too many assessments wrong whilst still being paid hundreds of millions of pounds from the tax-payer.

“I believe it is time for disability assessments to be brought in-house as part of our public services, and also the whole approach needs to be changed.

“It’s clear they bring a considerable amount of unnecessary suffering to many disabled people and, frankly, the figures show they’re not fit for purpose.”

The party already had a policy to scrap WCAs completely and replace them with “a more humane system devolved to local authorities”.

Lloyd said: “While I am a strong believer in the benefits of a market economy, the profit motive has absolutely no place in determining the safety net for the most vulnerable.

“Enough is enough. Private firms should play no further role in deciding whether sick and disabled people are eligible for benefits.

“Both the work capability assessment and PIP tests should be brought in-house immediately, with a ban on further private sector involvement.”

When asked whether the figures raised any concerns about the assessment process, and the role of outsourcing companies within it, a DWP spokesman said: “Since PIP was introduced, 2.9 million decisions have been made, and of these only eight per cent have been appealed** and four per cent have been overturned.

“The majority of successful appeals are overturned because people have submitted more written or oral evidence.”

The latest social security tribunal service figures show that, of those PIP claims that reach the appeal stage, 68 per cent are successful.

The new PIP figures should make it harder for ministers to defend the PIP assessment system, at a time when the work and pensions committee is completing its inquiry into the PIP assessment system and the WCA.

The inquiry has produced more online evidence from the public than any other investigation ever held by a Commons select committee.

DNS has been carrying out a year-long investigation into claims of dishonesty at the heart of the PIP assessment system, and has revealed that complaints about the process rose by nearly 900 per cent in 2016.

*DWP says the figures are “taken from internal DWP management information and should be viewed as estimates”, “should be used with caution”, and “may be subject to future revision”.

**DWP says this figure refers only to appeals to tribunal and does not include requests for a mandatory reconsideration, the first stage of the appeal process

4 January 2018



Anger after writer with ‘insulting’ views on inclusive education is appointed to watchdog

The government has sparked shock and anger after appointing a controversial right-wing writer and free schools advocate – who made “insulting” and “extremist” comments about inclusive education and eugenics – to the board of its new higher education watchdog.

The Department for Education (DfE) announced this week that Toby Young was one of its last six appointments to the board of the Office for Students (OfS).

OfS is the new regulator for the higher education sector, and the government claims that it will “put the student interest at its heart”.

But the appointment of Young – known as both the author of the best-selling memoir How To Lose Friends And Alienate People and the co-founder of a free school – caused anger and shock this week, particularly among campaigners for inclusive education.

Five years ago, in an article for the right-wing magazine The Spectator, Young wrote, in an article about plans to bring back O-levels, of how “inclusive” was a “ghastly, politically correct” word, which meant that schools had to have “wheelchair ramps… and a Special Educational Needs Department that can cope with everything from Dyslexia to Munchausen Syndrome by Proxy”.

He added: “If [Michael] Gove is serious about wanting to bring back O-levels the government will have to repeal the Equality Act because any exam that isn’t ‘accessible’ to a functionally illiterate troglodyte with a mental age of six will be judged to be ‘elitist’ and therefore forbidden by Harman’s Law.”

He later added a footnote that claimed he was not opposed to including disabled people in mainstream education and suggested that critics had misunderstood him.

He has also written, in another article, of how he is in favour of “progressive eugenics”, arguing that “it is not through changing the culture that we will be able to solve the chronic social problems besetting the advanced societies of the West, but through changing people’s genes”.

He adds: “What I’m proposing is a form of eugenics that would discriminate in favour of the disadvantaged.

“I’m not suggesting we improve the genetic stock of an entire race, just the least well off.

“This is a kind of eugenics that should appeal to liberals – progressive eugenics.”

A series of disabled campaigners have spoken out to criticise his appointment.

Rachel O’Brien, disabled students’ officer for the National Union of Students, told Disability News Service (DNS): “While Toby Young’s views are sadly not abnormal, it is striking that somebody with such a large repertoire of inflammatory articles and statements disparaging student diversity has been appointed to the Office for Students board.

“Disabled students should have the right and opportunity to access all levels of education on an equal basis to non-disabled people – the problem is not that we have impairments, but that our education system is not inclusive.

“The Department for Education and the OfS must not lose sight of the needs of students across the UK and focus on making sure that our education system is inclusive of all people.”

Sue Bott, deputy chief executive of Disability Rights UK, said: “Whatever student interests Toby Young is supposed to be looking out for it is unlikely to be disabled students, given his track record of calling for the abolition of inclusion policies and his insults to disabled people.

“Given the changes to disabled students’ allowance, it is a worrying time for disabled students.

“What is needed in the new Office for Students is someone who will champion the interests of disabled people.”

The disabled journalist and presenter Mik Scarlet said Young’s appointment was like giving the right-wing commentator and former reality TV star Katie Hopkins a say in the country’s immigration policy.

He told DNS: “The appointment of Toby Young, who openly supports eugenics for the poor, wants to end inclusive education and has written asking to have the Equality Act repealed, is yet more proof that our current government holds disabled people in great disdain.”

He pointed to comments made by chancellor Philip Hammond that blamed disabled people for the country’s poor economic performance, and government social security changes that had “targeted disabled people whether they are in work or not”.

He said: “To give someone like Young, who has openly written about supporting ‘progressive eugenics’, a position over the futures of our youth is shameful.

“We all know that some extremists on the right of politics believe disabled people are a drain on society, but it is becoming more and more clear that this kind of thinking is becoming government policy.

“Toby Young should be seen as a dangerous extremist, not a person worthy of helping shape the future of education in the UK.

“If the May government doesn’t remove him immediately, they are showing their true colours.

“Disabled people have to take a stand on this appointment or things may get even darker than they are now.”

Disability activist Aisling Musson said Young’s appointment was “triply insulting to students”.

She said: “Firstly, he represents a political appointment made on the grounds of cronyism.

“He is serially under-qualified to speak on educational matters and most of his successes can be traced to being well-connected.

“Secondly, he is an out-and-out eugenicist and that the government would endorse his beliefs towards disabled people is appalling, but not surprising given their policies.

“Thirdly, his attitude towards inclusive education is not only vile and repulsive, but outdated and at odds with Equality Act legislation.

“The sheer contempt he has shown for disabled students is visceral, and his childish opposition to allowing disabled students access to education – a basic human right – smacks of Victorian era bigotry.”

Young told DNS that he had expressed himself poorly in his Spectator column, and insisted that he was not opposed to disabled children being educated in mainstream schools.

He said: “I am not an opponent of children with disabilities being educated in mainstream schools and, indeed, the four schools I have helped set up include children with a range of disabilities.

“In that column, which was a defence of Michael Gove’s proposals to reform GCSEs, I was using the term ‘inclusive’ to refer to the dumbing down of the national curriculum by the last Labour government so it could point to the increasing percentage of children doing well as evidence of school improvement.

“I accept that I expressed myself poorly and left myself open to misinterpretation as a result, but rather than rewrite or delete the original column I attached a clarification to the bottom of it.

“As you say, not everyone is persuaded by this – they claim to have a special insight into what I really think – and it’s hard to argue with people who think they can see into your soul.

“But please be assured, I do not possess the toxic views that have been ascribed to me.”

When asked why he had included the comment about ramps, he said it was “a silly thing to say”, and added: “If I could erase it from history I would.”

The Department for Education refused to respond to Young’s comments on inclusive education and eugenics, but said in a statement: “Toby Young’s diverse experience includes posts at Harvard and Cambridge as well as co-founding the successful West London Free School.

“This experience will be vital in encouraging new providers and ensuring more universities are working effectively with schools.

“The appointments to the board reflect the diverse needs of the higher education sector, young people and employers.

“The OfS board’s broad range of skills and experience across the field of education will ensure it is able to deliver for students.”

4 January 2018



Disabled Tory peer says government rejection of pub access plan is an ‘insult’

A disabled Tory peer has accused his own government of insulting disabled people by rejecting the chance to improve access to pubs, clubs and restaurants.

Lord [Kevin] Shinkwin said his party was in danger of “disowning” the laws it introduced through the Disability Discrimination Act (DDA) more than 22 years ago.

He was speaking during a Lords debate – a few days before Christmas – on the recommendations made by a committee of peers that had scrutinised the impact of the Licensing Act 2003.

One of the committee’s recommendations was a call for the UK government to follow the Scottish government in adopting a measure* that would force all licensed premises to produce a “disabled access and facilities statement” when applying for a licence to serve alcohol.

The statement would include details on access provisions, and any facilities the business had for use by disabled people.

The committee said in its report: “The provision by licensees of disabled access facilities does not impose on them a new obligation or financial burden, since this is no more than what they are already required to do by law.

“This requirement is a simple way of enforcing the law and ensuring that licensees comply with it.”

But when it responded to the committee’s report in November, the government said only that it would “consult disabled peoples’ organisations [DPOs] to understand better the extent of the problem”, and work with licensing enforcement officers and the licensed trade “to explore what practical measures can be taken”.

Lord Shinkwin – who is currently in dispute with the government over the alleged “collusion” of a minister with the decision not to appointment him as a disability commissioner on the equality watchdog – told fellow peers that to describe this response as “inadequate” was to be “charitably polite”.

He said the government’s response was “a carefully worded, sensitively put, insult” and was “a feeble fig leaf for yet more of the same – ​more inaction”.

He said: “What worries me most is that we seem rapidly to be getting to the point where my party is in danger of effectively disowning its own DDA.

“How can I say that? Sadly, all too easily, because, had we pursued such a passive approach to tackling disability discrimination 20 or so years ago, there would never have been a DDA.

“It simply would not have reached the statute book, and the Conservatives would not have been able to claim the credit for having accepted that, in the case of disability rights, change does not just happen by accident.

“It requires government action. In its absence, we are instead going backwards.”

The Tory peer Baroness McIntosh, who chaired the Licensing Act scrutiny committee, was also critical of her government.

She said: “As the government say they are sympathetic on the issue of accessibility and point out that the 2017 Conservative manifesto made a commitment to review disabled people’s access to licensed premises, why, when we offer them a cheap, easy and painless way to achieve that, would they not want to seize the opportunity?”

The Liberal Democrat peer Lord Foster, who was also a member of the scrutiny committee, said he was “deeply disappointed by the government’s rejection of our pragmatic proposals on disabled access”.

Baroness Williams, a Tory Home Office minister, repeated the government’s position that it was “sympathetic to the issues that have been raised on disabled access and the problems with ensuring that business and service providers comply with the requirements of the Equality Act 2010” and would consult with DPOs, licensing professionals and the industry.

She said: “We hope that this will result in significant improvements for disabled people without the need for additional regulations.”

*The Scottish government has still not implemented the measure, more than seven years after it was approved by parliament through the Criminal Justice and Licensing (Scotland) Act 2010. It told Disability News Service last January that it would bring in the measure by the end of the current parliament in 2021.

4 January 2018



Campaigner’s MBE will not stop pursuit of justice for thalidomide survivors

A disabled campaigner who has spent 14 years fighting for justice for survivors of the thalidomide scandal has vowed to continue the battle, after he was recognised with an MBE in the new year’s honours.

Nick Dobrik’s years of experience on the thalidomide campaign led to him volunteering to help campaigners seeking justice for survivors of other treatment scandals, including those affected by the pregnancy drug Primodos, the epilepsy drug Epilim and NHS contaminated blood.

Dobrik, a long-standing member of the Thalidomide Trust’s user-led National Advisory Council (NAC), said he was accepting the MBE on behalf of all of those involved in the thalidomide campaign – led by the NAC – and “all the thalidomide community”.

He said: “It was a privilege to receive it. It’s very nice to get recognised.”

But he said it was “a team effort”.

He added: “I could never have done this on my own. If we were not a team, we would not have achieved as much as we did.”

Dobrik, who works as a commodity broker, said the thalidomide campaign was not yet over.

In the last four years, he has visited the European parliament 80 or 90 times to fight for compensation for thalidomide survivors in the UK, as well as those in Sweden, Italy and Spain.

Four years ago, he and other campaigners secured evidence that showed the German government deliberately sabotaged efforts to secure justice for thalidomide survivors in the late 1960s and early 1970s, and that it knew the drug was associated with birth defects at least 10 days before it was withdrawn from sale in 1961, and almost certainly much earlier.

Although the campaign has secured financial support for thalidomide survivors from the British government and Diageo – which bought Distillers, the company which distributed the drug in the UK – there is still an ongoing battle for compensation from the German government and from Grunenthal, the German pharmaceutical company which manufactured thalidomide.

Dobrik said the campaign was “very close” to reaching an agreement with the German government on compensation.

But he said the “group that was most guilty” was Grunenthal, which had “contributed nothing” to support thalidomide survivors.

He said: “They are a nasty bunch. We will hold them to account. They can bury their heads in the sand, they can run as fast as possible, but they are never going to escape us.”

Dobrik said it was time that all the historic treatment scandals were resolved, as many of them go back nearly 50 years.

He said: “It is time that those issues are resolved. You cannot expect people to wait a whole lifetime before their needs are met.

“It is time for the government to act generously towards these groups and accept responsibility.

“These legacy issues need to be resolved. People have waited three-quarters of a lifetime for justice.”

Dobrik was an expert adviser to a working group that examined the use of Primodos and other hormone pregnancy tests, which reported in October.

But he has rejected its conclusion that there was no “causal relation” between the use of Primodos and impairments in babies born in the 1960s and 1970s.

Health minister Steve Brine was forced to apologise to Dobrik last month in the House of Commons after both he and the prime minister, Theresa May, attempted to use his presence as an expert advisor to the working group to defend that conclusion, which was attacked by critics as “a whitewash”.

Dobrik said: “I was very angry about that because I disagreed with the conclusion. They used my name to whitewash the report.”

But the working group also came up with recommendations to tighten regulations “to make sure things like this don’t happen again”, something he has campaigned for himself, particularly on the safety of medicines taken by women during pregnancy.

He said: “The inquiry came up with a whole series of recommendations and I will hold the government’s feet to the fire to make sure they are enacted.

“I’m happy that I’ve been involved in that inquiry for the last three years, because it gave the opportunity to look at these regulations and make recommendations to decrease the likelihood that another tragedy will happen again.”

4 January 2018



OBE for Access to Work boss is ‘further slap in the face’ for disabled people

Disabled campaigners have criticised the decision to award an OBE to the senior Department for Work and Pensions (DWP) civil servant responsible for delivering the much-criticised Access to Work (AtW) scheme.

Rilesh Jadeja, AtW’s national delivery manager, was recognised in the latest new year’s honours “for services to people with disabilities”, just two months after new research found the future of the scheme was in jeopardy because of “bureaucratic incompetence” and a cost-cutting drive to reduce people’s support packages.

The research, commissioned by Inclusion London, said that “shocking levels of delay, error, and the de-skilling of staff” within AtW were putting Deaf and disabled people’s jobs at risk.

AtW provides disabled people with funding to pay for some of the extra disability-related expenses they face at work – including travel, personal assistants or the use of BSL interpreters – reducing the costs organisations meet when taking on disabled employees.

The Inclusion London report said the scheme was “a cornerstone of the movement for equality and civil rights for Deaf and disabled people in the UK” but had been “beset with so much bureaucratic incompetence and obstructionism in recent years that, in many respects, Access to Work is no longer fit for purpose”.

Jadeja’s award also came only three weeks after a Deaf chief executive launched a legal case against DWP over the “discriminatory” cap it has imposed on the amount of support available through AtW.

The cap was introduced for new AtW claimants in 2015 and is due to affect existing claimants from April.

Linda Burnip, co-founder of Disabled People Against Cuts, said: “This award is as farcical as the DWP twitter asking about what DWP has done for claimants over the last 12months*.

“Given the many serious issues outstanding with cuts to Access to Work funding, which have seriously disadvantaged many disabled people and actively prevented them accessing employment, it can only be described as a further slap in the face.

“It does of course show just how meaningless such awards actually are.”

Nicky Evans and Geraldine O’Halloran, from the StopChanges2AtW campaign, said: “SC2AtW strongly condemn the whole system of rewarding someone who has been paid to do a job an additional award which is not based on any achievement, and to make matters worse, under the guise of services to disabled people.

“Services have, under this government, got progressively worse for Deaf and disabled people.

“We would have preferred to be saying ‘well done’ to DWP for delivering a fully supported Access to Work service to Deaf and disabled employees.

“Instead we have record number of Deaf and disabled people experiencing cuts to budgets and this is impacting on their ability to get on with their job. The government continue to ignore our plight.”

Asked how DWP justified recommending Jadeja for the award, a DWP spokesman said: “Honours – like this one given to Mr Jadeja – are awarded to individuals on merit for their own exceptional achievement or service.

“It’s important to note that honours are backed by independent honours committees.”

*DWP’s Twitter feed drew hundreds of angry and critical responses when it announced last week that it was “looking back at some of our highlights of 2017”, with many disabled people pointing to its failure to point out that it had been heavily criticised by the UN’s committee on the rights of persons with disabilities over its record.

4 January 2018



New year’s honours recognise campaigners, inventor and Paralympians

Disability rights campaigners, an inventor and a Paralympic athlete are among the disabled people recognised in the latest new year’s honours list.

Among the 1,123 people who have received an award, five per cent – about 60 – consider themselves to be disabled people.

Among recipients of a CBE – for services to sport and accessibility – was Joyce Cook, chair of the disabled supporters’ charity Level Playing Field for nearly 10 years, and founder and former managing director of Centre for Access to Football in Europe.

As chair of Level Playing Field, Cook played a significant role in highlighting the problem of poor access for disabled fans at sports stadiums, particularly among Premier League football clubs.

Cook, now chief member associations officer for football’s world governing body FIFA, said: “It’s a very proud moment for me and my loved ones.

“The World Health Organisation considers more than 20 per cent of the global population to be disabled, yet there are very few disabled people in senior positions at this time, especially in the sports sector.

“The award recognizes the work I’ve been involved in for more than 15 years, but it also underlines the important work still being pursued by Centre for Access to Football in Europe and Level Playing Field.

“As a disabled person working for FIFA, and a member of the senior management board, I have a responsibility as a role model and I’m proud that FIFA is showing its commitment to diversity and inclusion.

“I hope that I can continue to play my part in the years ahead by using my personal and professional experiences within FIFA to continue to build more inclusive programmes and to ensure that football is truly welcoming to the many disabled people globally who aspire to be match-going fans, players or to follow careers within the game.”

Other honours for disabled people included an MBE for autistic rights campaigner Carly Jones, for services to autistic people.

Jones, who is autistic herself and has two autistic daughters, has campaigned in the UK and globally on autism and girls, having been told 10 years ago that it was “impossible” to have two autistic daughters.

She said the award showed “firmly and publicly” that “as British autistics we are valued, we are recognised and we are able”.

She added: “I hope that as not only a parent of autistic young women but also [as] an autistic woman myself, my MBE sends out a clear message that regardless of our challenges and differences [we] have something to offer our country of tremendous value.”

She said she hoped more adult women would “feel less afraid to disclose their autism to friends, colleagues and families so they can find other autistic women and feel less isolation”, while any young girl recently diagnosed would now “feel empowered by their diagnosis, not ashamed”.

Jones, from Berkshire, dedicated her MBE to “the autistic community old and young, who, despite having experienced misunderstanding and unkindness remain understanding and kind”.

In 2016, she told the UN Human Rights Council’s annual Social Forum in Geneva of the “clinical misogyny” and “misjudgements” that have led to autism being viewed as something that only affects white males, and of the violence and abuse experienced by autistic people.

Another MBE recipient – for services to disabled people – was Grant Douglas, from Edinburgh, the inventor of the S’up spoon, and founder and chief executive of S’up Products.

He said: “I’m absolutely delighted to be recognised for the work I have been doing to enable people with shaky hands to eat independently.”

Douglas, who has cerebral palsy, found it difficult to eat soft foods with a spoon and worked with the Glasgow-based company 4c Design to invent the S’up spoon, which has a deep cavity that helps keep food in the spoon until it is tipped into the user’s mouth.

Since the spoon was launched in 2015, more than 2,000 have been sold worldwide, and it is currently on display in London’s Design Museum and the Smithsonian Design Museum in New York.

Douglas said he hoped to use his MBE to help persuade politicians to provide funding so all professionals involved in social care assessments have access to a S’up spoon for their service-users to try.

He also hopes to develop “more eating utensils that will help people with shaky hands live a more independent life”, and to convert his company into a social enterprise.

Also recognised with an MBE was Paralympian Stef Reid, who won her first world title in the T44 long jump at last summer’s World Para Athletics Championships in London, a year after winning a second successive Paralympic silver medal at the 2016 Paralympic Games in Rio.

Reid was also a board member of the organising committee of the championships in London last summer, and has campaigned to challenge media perceptions of disability and how women feel about their bodies.

She said: “It had already been a great year, and this news left me completely stunned.

“I didn’t even believe it. My husband opened the letter and told me the news – I told him ‘don’t be silly, that’s ridiculous.’

“I am so thankful and honoured to be awarded an MBE. Sport has opened so many doors in my life and introduced me to some incredible people who have encouraged and challenged me. I am especially proud to represent a country that values para sport.”

Another Paralympian recognised with an MBE was Craig Carscadden, head of development at the Cerebral Palsy International Sports and Recreation Association, who receives the award for services to disabled athletes and the Paralympics.

4 January 2018


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