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My sister has a learning disability and I can’t visit her because of coronavirus 

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My sister has a learning disability and I can’t visit her because of coronavirus 

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The Guardian, Saba Salman, 24 March 2020

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Coronavirus has made enforced separation a universal experience, but there are additional and far-reaching challenges for learning disabled people and their families. I cannot visit my youngest sister, Raana, who has fragile X syndrome and lives in supported housing in Hampshire. My family has no idea when we will next see her.

Social distancing, self-isolation and a lockdown for the over-70s will have a seismic impact on Raana (our parents are in their 70s, our father has a lung condition). My sister's social contact is now limited to support workers paid to care for her and her learning disabled housemates. She uses text messaging but dislikes phone calls and writing letters.

The past week has seen thousands joining community efforts to help older neighbours. We need similar attention on the UK's 1.5 million learning disabled people. This is not because my sister's disability makes her "vulnerable", but because she is already among society's most segregated people. The health inequalities experienced by people with learning disabilities are well documented, and research suggests learning disabled people are seven times as likely as their non-disabled peers to be lonely.

What will happen if her trusted support staff fall ill or she has to self-isolate? What if she needs help with personal care?

"It's all the uncertainty that's difficult ... with staying away [if you're a relative]. The problem is that you isolate people, and loneliness is a killer," says Gary Bourlet, who has learning disabilities and is co-founder of charity Learning Disability England.

Raana thrives on consistency and routine, including dance classes, baking workshops and weekly shopping. Yet coronavirus means services are closing and people's movements are restricted. Online equivalents are not the same and do not always appeal if you have communication difficulties. What will happen if her trusted support staff fall ill or she has to self-isolate? What if she needs help with personal care?

While necessary, the coronavirus bill has potentially devastating implications for people like Raana. Support may be restricted to meeting essential needs, and emergency volunteers could replace care staff. This raises concerns about safeguarding and care quality, and, as families, campaigners and care providers warn, the basic right to support may vanish.

Learning Disability England has written to the health secretary, Matt Hancock, calling for the bill to be amended "to make sure the rights and entitlements of all disabled adults and children are not undermined".

Rhidian Hughes, chief executive of the Voluntary Organisations Disability Group, warns social care might temporarily become "purely functional", instead of "support focused on outcomes that enables people to be healthy and maximises their choice and wellbeing". It is clear that radical, short-term changes will have lasting negative repercussions.

Given that people with learning disabilities get poorer care and die earlier than those without, what will happen if Raana herself falls ill? There have been concerns that critical care guidelines issued by the National Centre for Clinical Excellence (Nice) during Covid-19 might effectively make it harder for learning disabled people to get intensive care. Barrister and disability rights specialist, Steve Broach, has warned the guidance must be clarified.

Even though my family admires and trusts my sister's support staff, it is still unsettling to suddenly be physically distant. Clare Kassa, chief executive of the charity Sibs, which supports siblings of disabled people, and of which I am a trustee, says: "Siblings fill in so many gaps for services - like outings, breaks, family occasions. But also the more subtle ones like vigilance, keeping an eye, safeguarding. When you can't be there, what happens? How do we siblings keep our brothers and sisters safe in such unprecedented times?"

We are feeling our way as the current crisis puts further pressure on an already fragile support system and exacerbates the marginalisation experienced by people like Raana.

Communicating clearly to my sister what the virus is is vital. Her support provider has been doing this and has protective equipment in place like masks and gloves as part of its contingency plan. Raana has been texting me "Hope all better soon" and asking about the kids, so she knows something is up.
Coronavirus hits ill and disabled people hardest, so why is society writing us off? | Frances Ryan
Individual providers are creating their own guidelines on how to explain to a person with learning disabilities the importance of washing their hands - for example, using picture stories. Many easy-read and accessible resources have been produced in the past week by a variety of organisations.

As a family, we are redoubling our efforts to stay in touch, by posting Raana more notes or cards, for as long as the mail service is reliable. My sister turns 31 in June and we always makes a big fuss of her birthday, with 10 of us gathering to celebrate, including the nephews and niece she dotes on. That is highly unlikely this year, which is distressing for us all.

This week, Raana's support workers are helping her to try out video calls. I hope it works, as this might just help us ride out what is going to be a long, fearful and lonely time not just for Raana, but for her loving family too.

* Saba Salman is a journalist specialising in learning disabilities and editor of the Made Possible, a forthcoming book of essays written by learning disabled people
Topics

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My sister has a learning disability and I can't visit her because of coronavirus | Saba Salman

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Coronavirus has made enforced separation a universal experience, but there are additional and far-reaching challenges for learning disabled people and their families. I cannot visit my youngest sister, Raana, who has fragile X syndrome and lives in supported housing in Hampshire. My family has no idea when we will next see her.

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Whorlton Hall abuse: 'Devious staff' misled inspectors

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Whorlton Hall abuse: 'Devious staff' misled inspectors

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BBC news 18 March 2020

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Failings by the care watchdog and a "toxic culture" may have allowed "devious staff" to abuse vulnerable hospital residents, a review has found.

Whorlton Hall in County Durham was closed after a Panorama investigation appeared to show patients with learning difficulties being mistreated.

The Care Quality Commission (CQC) was criticised over its inspections and regulation of the Barnard Castle site.

The review said a small group of staff "deliberately misled" inspectors.

The CQC has already been criticised for not properly acting on concerns of whistleblowers, including a failure to publish a critical 2015 report by inspector Barry Stanley-Wilkinson.

Whorlton Hall, which treated patients with severe learning difficulties and autism, had seven CQC inspections between 2015 and 2019, when the Panorama programme was broadcast.

More on this story:

Clinical psychologist Professor Glynis Murphy's review heard from staff who had been on the "shop floor" and talked about the "toxic culture" among a small group of staff in Whorlton Hall.

The review went on: "This so-called 'alpha group' of staff had worked in Whorlton Hall for many years and it seemed that senior staff had recognised that they behaved inappropriately in various ways, engaging in conversations that were unsuitable between themselves, and socialising closely outside of work as well as in work.

"According to whistleblowers, two staff members, who had been considered to be the ringleaders, had been moved out of Whorlton Hall by senior managers to different services on two occasions, between 2014 and 2016, each time for a period of months.

"Those interviewed reported the service had improved in their absence, and yet they were allowed back each time, after being disciplined, apparently because there were insufficient grounds to sack them."

The review said levels of restraint used at Whorlton Hall were "sometimes very high" and that there were suggestions some residents who had complained about abuse were pressurised to withdraw them by "unscrupulous staff".

Covert CCTV

The review added: "Where there is a small group of devious staff who deliberately mislead both those engaged in inspection and regulation processes, it is very difficult to detect their actions, especially when service users are very vulnerable and have limited communication skills.

"In hindsight, unannounced visits, especially at evenings and weekends, may have helped to detect failings in the service."

The review makes several other recommendations, including more use of covert CCTV.

Ian Trenholm, chief executive of CQC, said: "We will be incorporating the recommendations into our new strategy to ensure we improve how we regulate mental health, learning disability and/or autism services to get it right for people who use these services.

"The work we are doing in our review of restraint, seclusion and segregation continues, and the final report will make practical recommendations for CQC and the wider system to improve care and outcomes for people with a learning disability and autistic people."

Danshell Group ran the 17-bed hospital unit in 2015 and was taken over by Cygnet in 2018. Cygnet said it was "shocked and deeply saddened" by the abuse allegations.
Follow BBC North East & Cumbria on Twitter, Facebook and Instagram. Send your story ideas to northeastandcumbria@bbc.co.uk .

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'Devious staff' misled abuse hospital inspectors

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Failings by the care watchdog and a "toxic culture" may have allowed "devious staff" to abuse vulnerable hospital residents, a review has found. Whorlton Hall in County Durham was closed after a Panorama investigation appeared to show patients with learning difficulties being mistreated.

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Brightly coloured Grace Eyre cab makes last ride

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Brightly coloured Grace Eyre cab makes last ride

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The Argus, Emily Walker, 18th March

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A DISABILITIES charity's brightly coloured taxi has taken its final fare.

The Grace Eyre foundation's London cab has been seen around the streets of Brighton and Hove for the past ten years.

It was donate to the charity, in Montefiore Road, Hove, by The Argus Appeal and Legal and General in 2010 and was used to take people with learning disabilities to the charity's active lives sessions.

But the diesel cab has now become uneconomic to repair.

Paul Barker, the charity's service manager for Brighton and Hove, said: "The taxi has been a real asset to Grace Eyre, it was used to drive people with learning disabilities so that they could attend sessions at our active lives centre and managers used it to travel between Grace Eyre's supported living services.

"Its colourful livery was also recognisable across the city."

The mother of one of the hundreds of people who benefited from the taxi said: "The Grace Eyre taxi has made an enormous difference to both our lives.

"Gone are the days when we had to drive to meet the minibus in Shoreham every day.

"And, with its distinctive colours, my daughter recognises the taxi as soon as it turns into our close.''

The charity said it had a strong commitment to reducing the use of diesel vehicles and would be running its "travel buddy" scheme to support those using public transport to get to activities.

The charity's deputy chief executive Chris Bland said: "We would like to pass on our thanks to both The Argus and Legal and General for enabling the charity to have such a fun vehicle to support people to do the things they want to do within their local communities."

The Grace Eyre Foundation was named after founder Grace Eyre Woodhead, who would place children with learning disabilities living in London slums in holiday homes in East Sussex. Her work started back in 1898.

The charity now works to ensure all people with learning disabilities are respected as equal citizens, are part of and contribute to their communities and can fulfil their dreams and wishes.

It works to help find high quality housing, support and activities for those with learning disabilities within their own communities.

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Charity taxi that has helped thousands makes its final journey

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A DISABILITIES charity's brightly coloured taxi has taken its final fare. The Grace Eyre foundation's London cab has been seen around the streets of Brighton and Hove for the past ten years. It was donate to the charity, in Montefiore Road, Hove, by The Argus Appeal and Legal and General in 2010 and was used to take people with learning disabilities to the charity's active lives sessions.

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Social Care Future, March 5 2020

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At the recent Social Care Future event in Manchester we heard and thought a lot about 'framing', or how we tell the story of what needs to happen to transform what we call social care. The narrative in the media is generally that social care is in crisis and heading for impending doom. This sort of framing only serves to create a sense of panic and helplessness, the result being we do nothing, because there is nothing more we can do. We see parallels with the way the media covers climate change too.

If we reframe the stories that we want to tell then we can demonstrate that change, and radical change is possible. That was the inspiration behind Stay Up Late's (un)Ordinary Conference which was held in London in Spring 2019.

Firstly, the conference was about giving a platform to people with a lived experience and all the speakers and facilitators were people with learning disabilities and/or autism. We didn't even have one token social care professional up on stage!

We did have an audience made up mostly of social care professionals though as we wanted them to go back to work and make changes based on what they were going to hear on the day.

The second main idea behind the conference was that it's really easy to be negative and talk endlessly about all that is wrong with the world, but again that does nothing more than create a sense of helplessness and despondency. We wanted to share positive stories of how people with lived experience had managed to live the lives they want.

We heard stories like:

Amber - who has a job working for an arts organisation in Manchester

Phil - who ditched his old support and found someone who would support him to achieve his dream of marrying his partner

Fiifi - who was supported to rebuild his relationship with his father through the grief of losing his mum

Laura - who talked about the joys of being a mum

Simon - who organises late night karaoke sessions with his mates in mainstream pubs in Cardiff

Ben - a young man who goes to raves along with other young people, based around their love of the same music scene.

All these stories posed the same over-arching question:

'how can we make 'ordinary' lives more of an ordinary thing for people with learning disabilities?'

At the conference we also launched our 'Manifesto for and Ordinary Life'. It's a straightforward document that fits on a postcard and echoes the same aims of Social Care Future. It was co-produced with people with learning disabilities and reminds us that we all probably generally want similar things in our lives; to be loved, to be valued, to be welcome in our communities, to see our friends when we want to and not be governed by inflexible rules.

Nobody who contributed to writing the manifesto ever told us about the sort of service specification type place that they wanted to live in. They just wanted a good life for themselves.

It has got me thinking how there seems to often be a big gap between what is commissioned and what people really want in their lives.

One example of this is how services are commissioned that enable flexible support. Our experience is that this just isn't working at the moment. Go to any club night aimed at people with learning disabilities and you will probably see the same thing happen. The dance floor will be rammed at 8.30pm by 9pm the place will be empty. Why? Because support staff can't work late and need to go and do 'the handover'.

There are of course support provider out there who totally know how to provide flexible support and in my experience those are the providers who don't instinctively just provide flexible support around evenings but also provide great support in other ways. They have a good culture around supporting people in making choices about their lives and understanding what is important to them.

So we've started a campaign called 'No Bedtimes' - inspired by the work of the Big Bed Time audit (which was in turn inspired by our work) we're now calling on an end to inflexible support that effectively means adults are told what time they need to go to bed.

We know that there is a lot more that needs to be done to make sure local authorities commission support provision that truly enables individuals to lead the lives they want but a simple pledge to ensure that all providers have to provide flexible support would be a start.

"No amount of talking can mend this broken heart but you can put the hoover round if you want to make a start". Valentine's day is over, Billy Bragg

I love this lyric as it always reminds me that we could sit around and talk about our problems all day, and how many people do we know who like to have meetings about this sort of thing? But there's also power (albeit a small change) in just doing something practical like putting the hoover round.

We know that there needs to be a radical overhaul of the thing that we currently call 'social care' as it's not fit for purpose but there is also a danger that we can sit in meetings and imagine new ways of doing things that as so radical it's hard for people to imagine where to start. You can imagine the ex-lover sitting there devastated with their broken heart and not knowing what to do.

A small practical action may not mend the real problem but it's a sign of intent, an act of kindness and it's a start!

I believe we all have to take practical actions that will make immediate differences and also set us on the path to a better future. So, I've set my 'hoovering' challenge at the end of this post.

What we also find though is that the language of commissioning is inaccessible. If those of us who aren't from a commissioning background don't understand it how can we be part of trying to help improve things?

More importantly if people who need support don't understand the commissioning process how can they exercise their rights as citizens in helping to shape the support they receive?

So here are Stay Up Late's questions and challenges for commissioners (and all of us)

1. How can we commission support that truly enables ordinary things to happen in peoples' lives?

2. How can we explain what commissioning is about in an accessible way?

3. Why can't we end the practice of support providers telling adults with learning disabilities what time they must go to bed?

4. What practical bit of 'hoovering' could you do right now to make a start with creating better lives for people who need support?

5. What can commissioners learn from those support providers who have embraced change and who are doing the right thing?

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By Paul Richards, Stay up Late At the recent Social Care Future event in Manchester we heard and thought a lot about 'framing', or how we tell the story of what needs to happen to transform what we call social care. The narrative in the media is generally that social care is in crisis and...

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Eleonore Laloux is looking to prove it as France’s first political candidate with Down’s Syndrome

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Eleonore Laloux is looking to prove it as France’s first political candidate with Down’s Syndrome

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BBC news 13 March 2020

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And Eleonore Laloux is looking to prove it as France's first political candidate with Down's Syndrome

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The Be Human Movement has been formed by people and partner organisations connected to In Control Partnerships. It's a group of committed people who recognise the difficulties in today's society where people are being treated less than human in a variety of settings. we've all had the experience of being treated like a cog in a machine; automated responses, unfeeling customer service, institutions with impenetrable rules and regulations, confusing systems and bureaucracy, the 'computer says no' mentality.

The inhumane treatment of people doesn't just happen in big institutions but takes place at a much more discrete and minor level every day in ordinary everyday places.

Industrial systems and treating people as commodities is bad for society.

On top of the 'normal' barriers to getting support for daily living, we are constantly confronted with inaccessible systems, being sent down rabbit holes, payment delays and associated worry, stress of not understanding things, lack of opportunity to speak to someone directly and the overwhelming complexity of it all. The cumulative effect is extremely damaging to society's health and well-being, certainly to anyone who is older, has a long-term health condition, or is more vulnerable e.g. to potential scams. With added pressures on families alongside reductions in support from the NHS and welfare services, we believe it is everyone's responsibility to look out for each other and help where we can. Therefore we have established a movement to positively encourage a better approach and attitude in all organisations. We fundamentally believe people would rather help than hinder people and that often tricky systems can get in the way of this. So by creating principles we aim to help people in organisations take a good look at what they are doing, how they doing it and talk about how they could improve things based on these principles.

The principles were created by a vast group of citizens across the UK who had experience (direct or research) into what made organisations feel more humane to those working or receiving goods or services from them.

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The Be Human Movement has been formed by people and partner organisations connected to In Control Partnerships. It's a group of committed people who recognise the difficulties in today's society where people are being treated less than human in a variety of settings.

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Former minister says government would lose human rights challenge

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Former minister says government would lose human rights challenge

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Rebecca Thomas 10 March 2020

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Charity that campaigns on autism discrimination unfairly sacked autistic care worker

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Charity that campaigns on autism discrimination unfairly sacked autistic care worker

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Disability News Service 5 MArch 2020

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A disability charity which campaigns for an end to discrimination against autistic people in the workplace unfairly dismissed an autistic member of its own staff, an employment tribunal has found.
Dave Gregson was employed as a support worker by United Response for seven years until he was dismissed in late 2018 after the charity claimed he was no longer able to do his job.

United Response dismissed him after concluding that the adjustments that would be needed to allow him to continue working would not be reasonable and would be too expensive.

The decision was made even though the charity failed to consider whether one of its own trained job coaches could work with Gregson, the tribunal heard.

It also ignored the suggestion of an occupational health expert to seek advice from the National Autistic Society, and it failed to explore whether the government's Access to Work scheme could provide funding to provide him with a job coach.

The tribunal said Gregson was "articulate and intelligent and thorough although prone to excessive elaboration and detail in his answers to questions", and also described him as "honest in his recollection of events" and said he always put the people he supported and their dignity "at the forefront of his considerations".

The charity had described him as "professional" and "intelligent, caring and kind".

His tribunal claim originated with concerns about his wellbeing that were raised with him in November 2016, and a decision to restrict his duties at a residential home for disabled adults in Leeds.

But there were concerns about his failure to comply with those restrictions, which eventually led to him being placed on gardening leave.

United Response considered all the adjustments that would need to be made for him to return to work and decided that he could not work at any of its local services.

It eventually dismissed him six days before Christmas 2018 after concluding that the adjustments that would need to be made for him were not reasonable.

But the tribunal judge concluded: "In all the circumstances [United Response's] decision to terminate the Claimant's employment fell outside the responses open to a reasonable employer. The Claimant's complaint of unfair dismissal succeeds."

The judge dismissed further claims of disability discrimination and victimisation, while Gregson had earlier withdrawn a complaint of sex discrimination.

He concluded in the tribunal judgment: "The decision to dismiss may have been unreasonable... but it was not a knee-jerk reaction to an autism diagnosis."

Gregson was dismissed nearly a year after telling the charity that he had been diagnosed as autistic, although United Response had previously known that he had depression, anxiety and obsessive compulsive disorder.

When approached by Disability News Service, United Response refused to say if it would apologise to Gregson, and why it failed to explore the idea of a job coach, Access to Work support, and advice from NAS.

It also refused to say whether it accepted that this was poor practice from an organisation that had signed up as a "Disability Confident Employer" under the government's much-criticised disability employment scheme.

But the charity's chief executive, Tim Cooper, said in a statement: "While disappointed, we accept the verdict of the recent employment tribunal relating to our former support worker David Gregson.

"We will now review the details of the case and consider the feedback from the hearing."

He claimed the charity was "known locally for providing good quality care" and was "accountable for delivering high standards at all times and across all our services", which includes "acting in the best interests of the people we support, ensuring they are safe and can live the best quality lives possible".

He said the charity was "firmly against discrimination of any sort towards people with learning disabilities or autism".

He added: "We acknowledge that this has been a stressful period for many, particularly David, and we wish him the very best in his future endeavours."

But Gregson said he was disappointed with United Response's statement.

He said: "It doesn't acknowledge or express any regret or remorse. I also would have hoped there would have been some sort of acknowledgement or thanks for my service."

He said he had worked with the charity's head office on campaigns, including one on disability hate crime, right up to the point when he was dismissed.

Gregson said he hoped the charity would now introduce measures to prevent future cases like his, including training on the Equality Act and employment law, and improvements to the way it supports autistic employees.

He said: "I tried to avoid this through conciliation and mediation but there was no meaningful dialogue so there was little option other than for me to bring this [legal] action."

Only last May, United Response launched its Am I Your Problem? campaign, which aimed to challenge the "indifference, hidden discrimination and sometimes outright hostility faced by people with a learning disability or autism", including in the workplace.

Cooper said in launching the campaign that "hidden discrimination" was taking place in businesses, workplaces and schools.

He called on non-disabled people to "become the solution, not the problem" and help create "a society which is open to all and gives everyone a fair chance in all walks of life".
Picture: Dave Gregson protesting about his treatment outside United Response's offices in Leeds A note from the editor: Please consider making a voluntary financial contribution to support the work of DNS and allow it to continue producing independent, carefully-researched news stories that focus on the lives and rights of disabled people and their user-led organisations. Please do not contribute if you cannot afford to do so, and please note that DNS is not a charity. It is run and owned by disabled journalist John Pring and has been from its launch in April 2009. Thank you for anything you can do to support the work of DNS...

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Charity that campaigns on autism discrimination unfairly sacked autistic care worker

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A disability charity which campaigns for an end to discrimination against autistic people in the workplace unfairly dismissed an autistic member of its own staff, an employment tribunal has found. Dave Gregson was employed as a support worker by United Response for seven years until he was dismissed in late 2018 after the charity claimed he was no longer able to do his job.

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Learning Difficulties: Why Are They There?

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Learning Difficulties: Why Are They There?

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The Science Times 11 March 2020

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It was always thought that learning difficulties are found in specific brain regions. But it turns out that this is not the case, according to the researchers from the University of Cambridge. Instead, it has more to do with the connections between 'hubs' within the brain.

A learning disability is not an indication of a person's intelligence. A person can have more than one learning disability, which can last a person's entire life but this does not affect how successful they are, given the appropriate support they need.

The frontal lobe of the brain is the primary area of fundamental abilities such as planning, organization, attention, impulse-control, and making sound judgment. Previous researches have associated learning disabilities to this part of our brain but a recent study about learning abilities says otherwise.

Some learning disabilities include dyslexia or the difficulty in reading words accurately and easily, dysgraphia, which is the condition of impaired handwriting, dyscalculia referring to the difficulty in understanding arithmetic concepts, and dyspraxia or the difficulty in speech.

ADHD, also known as Attention-Deficit/Hyperactivity Disorder, is one of the most common learning disabilities. People with ADHD have a short attention span and sometimes this is associated with hyperactivity or impulsivity. It is commonly linked to specific brain parts such as the anterior cingulate cortex, caudate nucleus, pallidum, striatum, cerebellum, prefrontal cortex, the premotor cortex and most parts of the parietal lobe.

But scientists have a hard time identifying specific regions causing these disabilities. One of the reasons could be from the fact that diagnoses differ so much between one person to another.
ALSO READ: The Link Between the Brain and Architecture
A team of scientists from the MRC Cognition and Brain Sciences Unit at the University of Cambridge proposed that one of the possible reasons why these diagnoses differ from each other is that there is no specific brain region that can either explain or cause these difficulties.

To prove their claim, the researchers scanned 479 respondents, which include 337 children who were associated with learning-related cognitive problems and 142 children as a control group. The experiment involved using machine learning to map their brain differences. The results of their study were published on February 27 in Current Biology.

After their experiment, they found out that there are no brain regions associated with learning disabilities such as ADHD. Instead, they discovered that the children's brains are in 'hubs' or efficient traffic systems.

Those with well-connected hubs have no difficulties or may have specific ones like poor listening skills.

In contrast, those who were found to have poor connections have widespread and severe difficulties, such as that of 14 to 30 percent of children around the globe.

Dr. Duncan Astle said that one implication of their study is that it suggests that interventions should be less reliant on diagnostic labels. For example, two children with ADHD could be very different from each other.

He also suggested that their results could help teachers to design interventions from which a whole class could benefit. They could also tailor one that supports a child's areas of cognitive difficulty by harnessing their strengths.

The results may also explain why the drugs that are usually prescribed to these individuals are not proven effective. For example, the drug Methylphenidate (Ritalin), which is used to treat ADHD may appear to reduce hyperactivity but does not cure cognitive difficulties or improve educational progress. Drugs only have a little impact on a 'hub-based' organization because it only targets specific types of nerve cells.

This discovery is not the first time that the 'hubs' are connected to a mental health disorder. Earlier research from Cambridge University has previously shown that these 'hubs' also play a role in schizophrenia among adolescents. However, this is the first time that it can also be connected to the origin of different learning disabilities.

©2017 ScienceTimes.com All rights reserved. Do not reproduce without permission. The window to the world of science times.

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Learning Difficulties: Why Are They There?

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It was always thought that learning difficulties are found in specific brain regions. But it turns out that this is not the case, according to the researchers from the University of Cambridge. Instead, it has more to do with the connections between 'hubs' within the brain.

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Cian Binchy: ‘Neurodiverse performers need to make a living too’ 

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Cian Binchy: ‘Neurodiverse performers need to make a living too’ 

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Guardian, Saba Salman 10 March 2020

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"I like being flamboyant," says pioneering performance poet, writer and actor Cian Binchy. "There's not enough of that these days - everything's so dull and conservative."

These are not adjectives you would associate with Binchy, autism consultant on award-winning play The Curious Incident of the Dog in the Night-Time, which will be touring the UK and Ireland for a third time from the autumn.

As an autistic actor, Binchy, 29, has challenged the infantilisation of disabled people, by playing a giant baby in a pink romper suit (Binchy is 6ft 1in). In his critically acclaimed one-man show, The Misfit Analysis, which premiered at the 2015 Edinburgh festival, he also challenged preconceptions about the autistic mind.

He is currently starring in unReal City at Battersea Arts Centre in south London, in a virtual reality show he co-devised about life in a digital world. Binchy is also about to take on the role of part-time digital influencer at Access All Areas, a theatre company that puts on productions made by learning-disabled and autistic artists.He wants to reach more people so they understand the talent of performers like himself.

"Social media can be really bad for people with learning disabilities or autism. It's easy to hide behind a keyboard and bully other people. It's also not real life ... You can have a virtual home in a virtual world with a virtual social life, but we need people to have real lives in the real world, and real opportunities," says Binchy.

Arts Council England figures show that only 6% of people who work in the arts are disabled, compared with 21% of the wider working population (in film, the figure is 0.3%).

Binchy says: "You need to see yourself up there in order to be more confident and know that you're also included in society. There are so many amazing performers with learning disability and autism out there who deserve an opportunity to show what they can do."

He wants to see more inclusive arts charities like Access All Areas set up. "The problem is that people often think that the only kind of theatre that neurodiverse people can do is a tiny performance in a church hall ... people see it and say 'Ah, that's nice they're doing well'. But we don't just want to get out of the house - we want a purpose in life and we need to earn money just like anyone else. When I earn money, I can make a better living for myself, I'm doing something I love and it's being taken seriously."

Binchy is driven by the need to express himself "and wanting to show I'm doing something that I'm good at and have a talent for".

In his teens, he noticed how he was treated differently from his non‑disabled peers. "I hated watching all the other teenagers walking off to [the local] school, with me being stuck on this minibus [to the special school]. It was embarrassing, like segregation." He also felt overprotected at times, such as being followed too closely by well‑meaning support staff when learning to travel independently.

Binchy says people assume "we're all just victims or vulnerable". He adds: "We can be good, we can be bad. We can be funny." How does he describe his disability? "I have emotional issues and I'm autistic. I'd also say that I sometimes struggle with mental health. But people want to put you in a box just called 'autism' - even if they don't mean any harm, it's not as simple as that. I don't like being labelled."

Other challenges include society's presumption that "people like us" are asexual. "I remember talking to someone who said 'That's nice' when I introduced my girlfriend. That was so patronising. Why can't someone like me be in a relationship?" When he toured the Midlands with his one-man show, a B&B landlady spoke to his non-disabled colleague, not to him. He says: "She talked about me, not even looking at me. It made me feel terrible and like a child."

'Access is a human right': how deaf and disabled people are transforming theatre

He lives at home with his mother and younger brother Conor, who is autistic and non-verbal. "I worry about what will happen to my brother when my mum isn't around. I don't like what I hear about residential care - people not being able to do things they want to do but having to fit in with the [staff] schedule," he says. Through Access All Areas, Binchy has trained nurses to improve learning-disabled and autistic patients' experience of healthcare.

The actor also worries welfare reform is undermining people's support. "I'm on universal credit - don't get me started on that, it's been a nightmare. It is so complicated and it's hurting a lot of people."

Binchy says it is important that neurodiverse performers don't compare themselves with other disabled artists. "Everyone is an individual," he says. "We all have different talents and what you do will be unique."

Curriculum vitae

Age: 29.

Lives: Ealing, west London.

Family: Single, one brother.

Education: Springhallow secondary school, Ealing; Acton College (BTec drama, Gatehouse - a transitional programme for autistic learners); Hammersmith College (life skills); Royal Central School of Speech and Drama (performance-making diploma).

Career: March 2020 to present: Access All Areas digital influencer, Access All Areas performer and deviser, unReal City, Battersea Arts Centre; 2016 to present: artist, Access All Areas; 2019: played Tom Dee, Doctors, BBC; 2016: played Tate Le Saux, The Level, ITV; 2018: Madhouse re:exit play, Access All Areas; 2017 to present: actor, role-playing with student nurses to raise awareness about autistic patients; 2015-18: performer and writer, The Misfit Analysis (UK tour and ITESM University, Mexico); 2016: trainer, performance-making diploma, Royal Central School of Speech and Drama; 2014-18: regular performance poetry events; 2014-15: performer, Eye Queue Hear, Access All Areas, UK tour; 2012-16: acting consultant, The Curious Incident of the Dog in the Night-Time, Piccadilly theatre, London; 1984: Mr Douglas [a play], Lyric Hammersmith, London.

Public life: Public speaker at the 2015 Autism and Comedy Symposium at the University of Kent; Ambitious About Autism eventsand at the Houses of Parliament launch of the NHS autism/learning disability initiative Ask Listen Do.

Awards and honours: 2016: People's Choice award for The Misfit Analysis at the Vault festival, London.

Interests: Writing poetry, listening to music, swimming.
Topics

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Cian Binchy: 'Neurodiverse performers need to make a living too'

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"I like being flamboyant," says pioneering performance poet, writer and actor Cian Binchy. "There's not enough of that these days - everything's so dull and conservative." These are not adjectives you would associate with Binchy, autism consultant on award-winning play The Curious Incident of the Dog in the Night-Time, which will be touring the UK and Ireland for a third time from the autumn.

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This video is the result of a research project Exploring support for people with learning disabilities to find loving relationships, which took place at the Tizard Centre, University of Kent 2018-2019. The research was funded by NIHR School for Social Care Research.
In the video you will hear about the work of specialist dating and friendship agencies for people with learning disabilities and the important role they have in helping people live full adult lives.

For further information, contact kent.ac.uk/tizard/staff/acadstaff/michelle_mccarthy.html

Video produced by media2u - www.media2u.co.uk

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Inclusion Europe president Jyrki Pinomaa writes about his trip to Manchester where he met with Learning Disability England and attended their conference.

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Inclusion Europe president Jyrki Pinomaa writes about his trip to Manchester where he met with Learning Disability England and attended their conference.

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14 February 2020

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It always amazes me how easy it is to discuss with people whose thoughts are like one's own thoughts. You simply do not have to explain anything, you just start a conversation and immediately you understand each other.

I invited myself to attend Learning Disability England 's annual conference in Manchester this week. Learning Disability England has for some time already showed interest in becoming a member of Inclusion Europe. I decided that it was time to find out more about them and their work.

When I told their Chief Executive Samantha Clark about my intentions, I was happy to be welcomed by her as their guest to the conference, and to arrive already the night before. We both seemed to agree that this way we would have had more time for getting to know each other and our work. The day of the conference was fully programmed with conference sessions and there was less time for anything else.

I was lucky to find out that my visit in Manchester happened between two really heavy storms. The storm Ciara was during the weekend before and another one was already developing over Atlantic Ocean and was about hit the British Isles a few days after my departure.

Speaking the same language of inclusion

As I already mentioned, I arrived the day before the conference. First, I met with a few members of the Board of Trustees for a drink and after that we joined the others for a dinner organised for 25 persons, self-advocates, family members, academics and other professionals.

I had the chance to meet Learning Disability England's Board of Trustees and Members of their Representative Body. Fantastic inclusion people! We all spoke the same "language" and understood each other like we had been working together for years.

Learning Disability England

Learning Disability England is built upon three different perspectives:

self-advocates

families

organisations and professionals whose values are the same as those of self-advocates and families.

They talk about co-production, meaning that all parties should be brought together and that the users voice should never be neglected.

Impressive workshop by persons with profound and multiple learning disabilities

The Conference was interesting and it featured brilliant speeches. I did not have the time to attend every workshop, but the main point of my visit was to meet people anyway, and that I managed to do.

I was deeply impressed especially by one of the workshops. It was a presentation of three persons with Profound and Multiple Learning Disabilities (PMLD) and their support persons from Brighton.

These powerful self-advocates are members of a C4C group (Campaign for change), reminding us to always include everybody, also people with profound and multiple learning disabilities.

The meaning of not leaving anybody behind was showcased in an impeccable way in this workshop.

As it always happens after meetings or events by Inclusion Europe or by our members, I felt very much empowered when leaving Manchester. It was definitely a worthwhile visit!
Read more posts from our blog.
Read our recent paper: Empowering people with complex support needs (.pdf)
Register for our Europe in Action conference about inclusive education.

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It always amazes me how easy it is to discuss with people whose thoughts are like one's own thoughts. You simply do not have to explain anything, you just start a conversation and immediately you understand each other. I invited myself to attend Learning Disability England 's annual conference in Manchester this week.

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Strathclyde widening access programme wins national award

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Strathclyde widening access programme wins national award

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University of Strath Clyde 28 February 2020

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A University of Strathclyde-led programme, aimed at broadening higher education opportunities for people with disabilities, has won a Scotland-wide award.

The Breaking Barriers initiative, which helps young people with a learning disability gain university qualifications and work experience, was named winner in the Spotlight category of the Scottish Knowledge Exchange Awards.

The programme is currently in its third year, with 23 students in each of its first two cohorts and 16 registered for this year's. It is run by Strathclyde Business School in partnership with ENABLE Scotland, ScottishPower and Marriott Hotels.

The awards are presented by Interface, which matches businesses with academics to develop and research new products, services and processes. The winners were announced at a ceremony in Edinburgh.

Heather Stenhouse, Assistant Faculty Manager of Strathclyde Business School and Strategic Lead for Breaking Barriers, said: "We are very proud to collaborate with our partners on such an innovative programme.

"Breaking Barriers makes a difference in the lives of young adults with learning difficulties, supporting them to undertake a university experience and gain real work experience with two of Scotland's largest employers. They are also able to graduate at a fully inclusive ceremony at Strathclyde's Barony Hall.

"Being able give support to these young adults is absolutely priceless."

The Spotlight Award celebrates a partnership between a business sector and an academic discipline to provide an innovative solution to a challenge.

Dr Siobhán Jordan, Director of Interface, said: "I always really enjoy the Scottish Knowledge Exchange Awards which are now in their fifth year. Not only do we celebrate the achievements of the businesses we've helped match with academic expertise, this unique ceremony showcases the immense talent and expertise in colleges and universities working with industry, which enable sustainable and inclusive economic growth and job creation.

"The pioneering individuals and R&D partnerships recognised at the Awards have brought huge benefits and impacts which ripple locally, regionally and globally to truly drive industry-led innovation."

Ivan McKee MSP, Minister for Trade, Investment and Innovation, presented the awards. He said: "I'd like to congratulate all the nominees and winners who have been recognised for their outstanding work at the Scottish Knowledge Exchange Awards.

"Not only do these awards celebrate activities and projects happening all over Scotland, they bring people together and create new collaborations and partnerships. Their innovation plays a crucial role in boosting productivity and creating sustainable economic growth for the country."

Strathclyde had three other nominations in the awards. A collaboration between the Business School and CHAS (Children's Hospices Across Scotland) was shortlisted in the Making A Difference category; this venture has developed an accessible and inclusive process of strategy-making based on the views of stakeholders, including children and young people. The outcome has resulted in CHAS being able to increase significantly its referrals and the number of families it supports.

There were also two Strathclyde nominations in the Innovator of the Future category. Lilia Potseluyko Amobi, a KTP Associate with the Department of Architecture, was shortlisted for work building on an initial Innovation Voucher-funded project with Caithness-based Norscot Joinery Ltd. This developed a 'virtual showhome' enabling clients to 'walk through' their design concept prior to build; the follow-on Knowledge Transfer Partnership (KTP) has further transformed the business offering, developing new products, processes and solutions and enabling significant cost-savings to be achieved. An earlier project between Strathclyde and Norscot was named Innovation of the Year in the 2018 Scottish Knowledge Exchange Awards.

Dr Declan Bryans, a KTP Associate with the Department of Pure & Applied Chemistry, was nominated for leading a successful collaborative project with Lanarkshire-based Mersen to push battery electrode materials beyond their current known limits. Through the KTP, the collaboration will better enable the development of highly efficient flow batteries on a global stage and support the move towards sustainable renewable energy use.

The Knowledge Exchange Awards win for Breaking Barriers follows its success at the 2019 Times Higher Education Awards, in which it was named Widening Participation or Outreach Initiative of the Year. Strathclyde was also named Times Higher Education UK University of the Year, becoming the first institution to win this award twice.

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Strathclyde widening access programme wins national award | University of Strathclyde

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A University of Strathclyde-led programme, aimed at broadening higher education opportunities for people with disabilities, has won a Scotland-wide award. The Breaking Barriers initiative, which helps young people with a learning disability gain university qualifications and work experience, was named winner in the Spotlight category of the Scottish Knowledge Exchange Awards.

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Dundee twins, 6, with Downs syndrome dowork experiance in heartwarming film 

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Dundee twins, 6, with Downs syndrome dowork experiance in heartwarming film 

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The Courier, Stephen Eighteen, 28 February 2020

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This heartwarming video shows identical twin boys who both have Down's syndrome as they test out jobs including a fireman - to raise awareness of the condition.

Ollie and Cameron Scougal, aged six, have stared in a national film about employment which their mum hopes will help change 'outdated perceptions'.

The boys, from Dundee, tested out jobs at the fire service, a café, hairdressers and a supermarket.

Mum Elaine claims there are too many 'outdated' views of Down's syndrome and people expect those with the condition to seek voluntary roles instead of paid work.

Elaine said: "I think there are a lot of outdated perceptions out there about Down's syndrome, and learning disabilities in general are a barrier to people getting jobs.

"There's an assumption by many that people with Down's syndrome don't have the competence or ability to work and that a voluntary role is more suitable if anything.

"I hope that the film helps employers to think about people with Down's syndrome as potential employees, people with hopes, dreams and ability.

"I also hope that it encourages parents to talk about employment opportunities with their children so that they have a presumption of seeking employment when the time comes.

"It's about creating the ethos of seeing each employee as an individual, not as a condition or disability, and evaluating how their individual needs can be met within any employment context.

"That takes an open mind, but I believe, slowly, more minds are opening to employing people with disabilities and tailoring training to meet needs."

Ollie and Cameron book their place at official opening of Angus learning facility

Ollie and Cameron have become internet hits since Elaine set up a Facebook page when they were just weeks old.

It now has more than 200,000 followers who enjoy watching videos of the boys and reading about their latest updates.

Elaine said: "After a few weeks of hearing some stereotyped views and pitying reactions to Cam and Ollie's diagnosis after birth, we decided we wanted to spread the word that our children were children, not defined by their chromosome counts.

"We set up the Facebook page and it took off so quickly, I think due to identical twins with Down's syndrome being quite rare, occurring at a rate of about one or two in a million births.

"Through the page, we have documented their journey as they've grown from three weeks old to nearly seven years old now through videos, photographs and stories.

"We get messages regularly stating that the page has opened their eyes about Down's syndrome in terms of rebutting stereotypes they might have held.

"Some people also comment that they were very aware that the boys had Down's syndrome when they first started following but now they've forgotten.

"That's a big thing - that the diagnosis just fades into the background and people just see them for who they are, Ollie and Cam.

"That's what we hoped for."

Watch: Dundee twins Ollie and Cameron play a starring role in a new World Down Syndrome Day video that is taking the world by storm

The twins took part in the Down's Syndrome Association's film for their employment programme WorkFit, which is seeking to promote the message that children with the condition should grow up expecting to be employed.

The WorkFit scheme brings together employers and jobseekers who have Down's syndrome.

It is a tailored service dedicated to training employers about the learning profile of people who have Down's syndrome so that they can be supported in the workplace.

Statistics show that nationally, just 5.9 per cent of people with a learning disability are in paid employment in England, which is a downward trend year-on-year.

WorkFit hopes that the new film will encourage more businesses to consider signing up to the programme.

Alison Thwaite, WorkFit employment and development manager, said: "The film aims to promote a 'presumption of employment', where children who have Down's syndrome grow up expecting to be employed and are spoken to about what they might like to do from an early age.

"They can then incorporate their career goals into their education and, when they're ready to transition to employment, come to WorkFit with ideas of what they would like to do.

"We also hope the film encourages more potential employers to consider signing up to WorkFit.

"All of our support is free of charge and without obligation and continues as long as the person who has Down's syndrome is employed."

ENDS

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VIDEO: Dundee twins, 6, with Down's syndrome do work experience in heartwarming film - The Courier

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This heartwarming video shows identical twin boys who both have Down's syndrome as they test out jobs including a fireman - to raise awareness of the condition. Ollie and Cameron Scougal, aged six, have stared in a national film about employment which their mum hopes will help change 'outdated perceptions'.

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Possability people

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Care charity unfairly dismissed autistic employee, tribunal finds

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Care charity unfairly dismissed autistic employee, tribunal finds

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Third Sector, 26 February 2020

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The learning disability charity United Response unfairly dismissed a former care worker after it failed to make adjustments to take into account his recent autism diagnosis, an employment tribunal has ruled.

After a hearing that concluded in January, Leeds Employment Tribunal has ruled that United Response unfairly dismissed Dave Gregson after the charity did not properly take measures that could help him return to work.

But claims of direct disability discrimination and victimisation were dismissed by the tribunal and a complaint about sex discrimination was withdrawn.

Gregson began working as a carer with the charity on 4 July 2011, mainly based at the charity's premises in Highgate Park in Harrogate, North Yorkshire.

The charity was aware that Gregson had obsessive compulsive disorder, anxiety and depression, but he was diagnosed with autism only in late 2017, and the charity became aware of this in 2018, the judgment says.

In late 2016, Gregson's line manager raised concerns about his performance, specifically about his wellbeing and the risk of accidental harm to beneficiaries.

When further concerns were expressed by members of the team, Gregson disclosed that he had been going through a difficult personal period. As a result, and with his agreement, some of Gregson's activities at work were restricted to reduce his workload.

But when the charity became concerned that Gregson was not complying with the restrictions, he was referred to occupational health, which recommended reducing Gregson's responsibilities.

After an altercation with a support worker in February 2017, Gregson was moved to another site run by the charity nearby.

In the wake of a disciplinary hearing about the altercation, Gregson was told his move to the new site was permanent and was also given a first written warning. Gregson appealed and the relocation was reversed.

In June 2017, discussions about Gregson's return to Harrogate began. An occupational health evaluation found him fit to return to work but without working sleep-in shifts.

Gregson's working hours were kept at 9am to 5pm and restrictions were kept in place on the types of duties he could perform.

After a number of disputes about the restrictions, Gregson was suspended on 25 July 2017, the judgment says.

In 2018, Gregson was diagnosed as autistic and was put on leave while the charity considered if he should return to work. It decided that he would not be able to return to Highgate Park, but he disagreed with the finding.

A review suggested that the support Gregson needed if he was to return was too onerous and there were no suitable alternative roles.

But an occupational health report on 20 June 2018 found some improvement with Gregson's ability to cope with his psychological issues. He was then viewed as fit to return to work, but concerns about his ability to follow instructions were raised.

With a perceived lack of suitable roles in services in the Leeds and Harrogate areas, the charity eventually decided to dismiss Gregson with immediate effect on the grounds of capability on 19 December 2018.

The tribunal decided that there was a failure to fully explore the potential of a "buddy" or job-coach system to support Gregson, and a failure to look into potential advice and assistance from the National Autistic Society.

A date is yet to be set for a remedy hearing that will decide how much the charity should pay to Gregson in damages.

The charity did not respond to Third Sector's request for comment.

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Care charity unfairly dismissed autistic employee, tribunal finds

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The learning disability charity United Response unfairly dismissed a former care worker after it failed to make adjustments to take into account his recent autism diagnosis, an employment tribunal has ruled. After a hearing that concluded in January, Leeds Employment Tribunal has ruled that United Response unfairly dismissed Dave Gregson after the charity did not properly take measures that could help him return to work.

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Brighton Dome launches new Access Scheme

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Brighton Dome launches new Access Scheme

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Brighton Journal 25 February 2020

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Brighton Dome & Brighton Festival have launched a new service to assist visitors with disabilities and other access needs to make their experience at events easier and more enjoyable.
The Access Scheme enables customers who have additional requirements to book accessible seats, arrange for venue staff to assist them in advance of a show and ensure complimentary personal assistant tickets are allocated.

Customers or carers can join the scheme by filling out a simple form, allowing Brighton Dome staff to register their needs, which will make bookings easier to complete. In line with a growing national scheme, visitors with hidden disabilities will also have the option to wear a Hidden Disability Sunflower Lanyardas a discreet sign to make venue staff aware that they may require extra assistance.

Customers can find out more about the scheme and sign up this Saturday (29th February) at Brighton Dome's Access Open Day, which will include free performances, talks and a backstage tour. There will also be a café takeover from Brighton based charity Team Domenica who support people with learning disabilities into employment, as well as craft activities and information stalls.

Brighton Dome developed the scheme in consultation with the charity Attitude is Everything, who aim to improve Deaf and disabled people's access to live entertainment performances.

Jacob Adams, Head of Research and Campaigns at Attitude is Everything said:

Attitude is Everything welcomes the launch of Brighton Dome's Access Scheme. The scheme provides efficient and person-centred customer service to Deaf and disabled people, enabling access requirements to be registered once without having to repeatedly submit evidence. It's fantastic to see another major venue develop their offer, joining our flagship campaign to promote ticketing without barriers. This initiative benefits audiences but also staff tasked with ensuring the delivery of top-class customer service which enables audiences to access Brighton Dome's full range of events.

Brighton Dome & Brighton Festival regularly programmes performances for adults and young people with a range of access needs in mind, including BSL interpretation and captioning, relaxed performances, touch tours, productions by disabled artists and a partnership with learning disability arts charity Carousel.

Andrew Comben, Chief Executive, Brighton Dome & Brighton Festival added:

By understanding our customer's accessibility needs we can provide a much better experience for those who need extra help or support during a visit to our venues or Brighton Festival events. We want to make the arts as inclusive as possible so that everyone can participate without restrictions.

Further information on how to join the scheme can be found online at https://brightondome.org/access/ or telephone 01273 261541 and email: access@brightondome.org.
Access Open Day: Sat 29 Feb, 12 noon to 4pm, free admission Brighton Dome, Church Street, Brighton BN1 1UE
Featured image: © Wikimedia Commons.

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Brighton Dome launches new Access Scheme - Brighton Journal

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Brighton Dome & Brighton Festival have launched a new service to assist visitors with disabilities and other access needs to make their experience at events easier and more enjoyable. The Access Scheme enables customers who have additional requirements to book accessible seats, arrange for venue staff to assist them in advance of a show and ensure complimentary personal assistant tickets are allocated.

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Unlocking the potential of assistive technology

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Unlocking the potential of assistive technology

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Sarah Clarke 25 February 2020

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Assistive technology has demonstrated itself as a key facilitator of high quality care delivery, so why aren't these solutions widely implemented across the home care sector? Home Care Insight asks industry suppliers about the key barriers to adoption and how their solutions have improved the lives of vulnerable adults, including older people and those with a learning disability, living at home.
A recent study of the social care sector by learning disability charity Hft found that the benefits of assistive technology are widely acknowledged, with 76% of providers in England stating that the use of technology leads to improved outcomes for the people they support.

However, while three quarters of care providers questioned in the 2019 Sector Pulse Check survey said that they use technology as part of their services, 81% admitted they are not using it to its full potential.

In response to this survey, HCI asked four top assistive technology suppliers about the main barriers to adoption and how care providers can overcome these challenges.

ARMED's wearable Polar Loop detects falls, allowing for early intervention.

What is Assistive Technology?

Assistive technology includes supportive services and equipment, ranging from personal alarms to sophisticated sensors that track movement and environmental changes in the home that could reveal a health problem or incident, such as a fall.

Of the providers surveyed who use assistive technologies, the most common type to use is communication aids, which are adopted by 79% of these providers. This includes using hearing aids and smart phones to facilitate communication.

But telehealth, which involves using technology to enable healthcare professionals to remotely monitor data on certain aspects of a person's health, such as oxygen levels in the blood, is the least used type of assistive technology, with just 11% of providers adopting this.

Meanwhile, telecare, which detects when there's a problem in the home and alerts carers to an incident, is used by less than half (38%) of care providers in England.

Progress is being made, but the potential for assistive technology is nowhere near realised. Our goal is to fully unlock the potential of this relatively new and untapped market."

With pressure building on A&E departments across the country, predicting and preventing the occurrence of accidents or trauma has been an aspiration within health and social care for many years.

But assistive technology suppliers say change is needed to ensure these good intentions can be turned into positive actions.

"Although the understanding of the potential for assistive technology is becoming more widespread, there is still some way to go," says Gavin Bashar, managing director of Tunstall Healthcare UK, which integrates smart technology with monitoring and services to support home providers in ensuring their clients have a wide choice of care options.

"From managing risks to aiding communication and helping to deliver greater privacy, assistive technology can enable people to have more control over the way they live their lives."

Tunstall Healthcare UK managing director Gavin Bashar.

Vayyar Imaging, a global specialist in 4D sensor technology, has recently developed Vayyar Home, a Radio Frequency (RF) monitoring system that scans an area of a person's home for falls - through walls, behind furniture of other obstructions - and immediately alerts caregivers or emergency services.

Vayyar Home sensors also keep track of movement and patterns, and will notify carers of unusual activity, while keeping them up to date with real-time reporting of posture and position, activity or rest.

Malcom Berman, director of marketing at Vayyar Imaging, says: "Year over year we've seen immense technological advancements in response to increases in life expectancy and the scale of our senior population. Our goal is to fully unlock the potential of this relatively new and untapped market.

"Progress is being made, but the potential for this technology is nowhere near realised."

We need to generate an understanding of how assistive technology can benefit everyone involved in the provision of home care."

Helen Dempster, chief visionary officer at Karantis360, whose IoT sensors monitor movement, humidity and temperature across a home, enabling a care provider to rapidly gain a picture of an individuals' day-to-day routine, agrees. She says the UK is slower than some countries in adopting assistive technology and realising its full potential.

"As we face a global shortage in healthcare workers, some countries are embracing technologies in their infancy in order to enhance their care levels. Japan, for example, has made 'carebots' prominent in its Shin-tomi nursing home and has committed to funding the development of more devices. Assistive technology has the ability to alleviate pressure on the whole social care eco-system and, most importantly, allow people to stay living in their own homes.

"Unfortunately, the UK is slower when it comes to the adoption of technology."

Barriers to Adoption

So what are the main barriers to the adoption of assistive technologies, particularly those that monitor a person's health and movement in order to prevent hospital visits?

The Hft survey, published in January, found that the cost of assistive technologies is the main barrier to using them, with 75% of social care providers saying they couldn't fund them. Furthermore, 71% of care providers said that local authorities are unwilling to fund them.

And research by ARMED (Advance Risk Modelling for Early Detection) backs up these findings.

"We asked a group of health and social care professionals what they believed were the main barriers in adopting prevention technology. The overwhelming response was a shortfall of financial budgets and a lack of vision," says ARMED director Brian Brown.

Armed director Brian Brown.

Launched in 2017, ARMED was developed by HAS Technology in partnership with Edinburgh Napier University. The company uses key health metrics alongside wearable device data to identify individuals who are at increasing risk of falling prior to an adverse event occurring.

Tunstall Healthcare agrees with ARMED that many home care providers have limited resources and budget to invest in solutions such as assistive technology.

"Individual care packages and person-centred solutions are often perceived as costly, and the benefits are often not understood or seen as outweighing the cost of investment," says Bashar.

"Therefore, organisations and local authorities often reduce the amount they spend, so care providers who drive down the cost of support while maintaining high standards are often penalised for their efforts."

A lack of awareness of assistive technology is also considered a barrier to adoption, as even organisations who do have the budget to purchase assistive technology still need to invest time in understanding what would work best for the people they support.

Unfortunately, the UK is slower when it comes to the adoption of technology and the problem is change."

More than half (59%) of care providers responding to the Hft survey said this was the main barrier to using assistive technology. Many staff are also unsure how to use new technologies, which dissuades organisations from purchasing new equipment, as they fear that it will not be used by staff.

"A lack of understanding often hinders the adoption of assistive technology in home care," says Bashar. "Many providers don't realise that assistive technology is person-centred and designed to meet the needs of individuals, often dramatically improving the quality of their life. The range of products and services available is also often unknown, leading care providers to bypass assistive tech solutions as they may not understand that there are products to meet every care requirement."

Brown from ARMED adds that other barriers include a lack of resources and digital skills to support the change management required, and insufficient education within a culture that is focussed on responding rather than preventing.

"Interestingly, there is also a lack of knowledge and awareness by senior managers to see the benefits of 'invest to save' in these types of technologies," he says.

The Smart Hub is Tunstall Healthcare UK's first 'connected care' home unit with monitoring and alarm features.

Overcoming the Challenges

So how can home care providers overcome these major challenges? Dempster believes care providers need to utilise the resources that are available to them by actively researching what's on offer, and then apply for funding or grants.

"Presenting the option of self-funding to families is another realistic option as often and where possible, the benefits of deploying assistive technology outweigh the cost," she adds.

Bashar says care providers can overcome barriers to adoption by investigating the benefits of investing in assistive technology.

Karantis360 chief visionary officer Helen Dempster.

"From freeing up the time of carers, to ensuring an alarm is raised immediately in the event of an emergency, we need to generate an understanding of how assistive technology can benefit everyone involved in the provision of home care," he says.

"Assistive technology can often significantly reduce the cost of social care provision, so it is our duty to work with providers to educate them in the financial benefits. As more home care providers understand that they will save money in the long run, the lives of vulnerable adults will continue to be changed for the better."

Bashar says providers should also consult with local organisations to understand how the government is working to ensure the safeguarding of the social care industry, and the part that assistive technology has to play in enabling this.

Berman from Vayyar believes education will play a key role in building the reputation of assistive technology and helping seniors understand the potential for significant quality-of-life improvements.

"On the provider side, making affordable solutions available to clients would go a long way in assuaging concerns over price and burden," he adds.

Brown, meanwhile, says a change in culture is needed - one that shifts from the more traditional reactive delivery of care to a preventative model that fully complements technology and human expertise.

"Lack of integration between health and social care is a huge barrier, and once this is broken down the rewards for citizens, their families and healthcare professionals will be plentiful," he says.

With the recent pledges for funding support for care providers, from local government, we hope to see more resources and support for the social care sector to access and implement the right type of technology for them and their customers.

Individual care packages and person-centred solutions are often perceived as costly, and the benefits are often not understood or seen as outweighing the cost of investment."

The Future of Assistive Technology
Going forward, home care suppliers believe that assistive technology can only continue to evolve as AI machine learning becomes more refined.

"Currently, the range of solutions that are benefiting the health and social care sector include wearables, sensors, remote monitoring devices, portals and apps," says Brown.

"New technology, such as Bluetooth water bottles and sweat monitoring watches, continue to be tested and introduced to the market, and they will all potentially have the ability to allow risks to be managed and issues to be identified before problems occur."

Berman agrees, adding: "We see the field moving towards more age-in-place technology, greater integration of AI and machine learning, and discrete solutions that don't impede on the dignity of their users. Solutions will be made more compact, with a focus on design that provides optimal safety while seamlessly integrating systems into seniors' lives."

At Tunstall, engineers are continuing to develop innovative software, hardware and wirelessly-connected services to enable new delivery models to transform health and social care provision, and keep up with the growing demand due to the ageing population.

"Over the next five years, we'll see assistive technology become increasingly centred around population management; looking at integration and person-centred care at scale to increase efficiency, the overall provision of care, and improve user experience," Bashar explains.

Tunstall's MyAmie allows users to call for help at the touch of a button.

He says that in the UK, the 2025 digital switchover will impact the solutions and services that can be delivered.

"Digital networks are 'always on' so care providers can access vital information 24/7. Always-on data sharing is fundamental in enabling preventative care and allowing care provision to become more proactive and integrated. As the digital transition progresses, assistive technology will become increasingly integrated and costs will dramatically reduce," Bashar adds.

Dempster says the future of assistive technology will provide a better and more timely understanding of clients' needs and provide more touch time between the client and the carer.

"Improving the quality of the human-human interaction will fulfil both the carer and the VIPs mental and physical health," she explains.

The chief visionary officer also believes that the use of smart home technology is rising, and with this comes wider levels of acceptance.

"The changing attitudes towards devices such as the Amazon Alexa are enabling these technologies to be used in all different sorts of ways. One council even recently started to use Alexa as a way of reducing the levels of isolation felt by its elderly constituents," she says.

"As people start to live more regularly with these devices and consider technology more friend than foe, they are becoming more accepting of adopting other devices, but it should not be a substitute for removing the human element. Carers will never be replaced by technology, but the smart home approach to social care could help them to better answer the ever increasing cries for help."

The changing attitudes towards devices such as the Amazon Alexa are enabling these technologies to be used in all different sorts of ways."

Bashar agrees, adding: "The concept of 'smart homes' is becoming an accepted reality, with technology such as smart speakers and smart boilers becoming commonplace. We're also seeing technology adoption evolve quite rapidly, with the so called 'silver generation' (55 - 70 age group) becoming more tech savvy and open to adopting technologies to help their daily living needs.

"There is huge potential for homes to begin harnessing assistive care solutions as the latest generation of technology can not only respond to issues such as fires, but increase contact with friends and family, provide access to online services and increase communication between care providers and their clients."

CASE STUDY
ARMED's wearable technology was initially adopted by the housing association market where it delivered impressive results that can be replicated in home care settings.

After just six months of implementing ARMED at Loreburn Housing Association, the control group experienced no falls during that time whilst the comparison group had 59 falls.

ARMED also identified one client who had a decreased heart rate at a similar time each day. This information was relayed to their GP and following examination, the issue was treated with medication before it could develop into something more serious.

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FEATURE: Unlocking the potential of assistive technology

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Assistive technology has demonstrated itself as a key facilitator of high quality care delivery, so why aren't these solutions widely implemented across the home care sector? Home Care Insight asks industry suppliers about the key barriers to adoption and how their solutions have improved the lives of vulnerable adults, including older people and those with a learning disability, living at home.

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How To Tackle England’s ‘Increasing’ Health Inequality

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How To Tackle England’s ‘Increasing’ Health Inequality

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Aaron Walawalker, Each Other, February 2020

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Experts have urged the government to take action as the life expectancy gap between the richest and poorest parts of England widens.

A report from the Institute of Health Equity has revealed that England's life expectancy has flatlined for the first time in a century.

It also found that the difference in life expectancy at birth between the least deprived 10 percent and most deprived 10 percent of areas was 9.5 years for men and 7.7 years for women in 2016-18 - up from 9.1 and 6.8 respectively in 2010-12.

In the poorest 10 percent of areas, women's life expectancy dropped between 2010-12 and 2016-18.

Prof Sir Michael Marmot, one of the country's leading experts on health inequality, produced the report 10 years on from his first review into England's health gap.

"England is faltering," he wrote. "From the beginning of the 20th century, England experienced continuous improvements in life expectancy but from 2011 these improvements slowed dramatically, almost grinding to a halt.

"For part of the decade 2010-2020 life expectancy actually fell in the most deprived communities outside London for women and in some regions for men.

"For men and women everywhere the time spent in poor health is increasing."

Across England, men's life expectancy rose by about half a year from 79.01 in 2010-12 to 79.56 in 2016-18, while in women it increased by about a third of a year from 82.83 to 83.18 during the same period.

Marmot added that, while it cannot be definitely proved, there is an "entirely plausible" link between widening health inequalities and a decade of austerity measures.

"Austerity will cast a long shadow over the lives of the children born and growing up under its effects," he wrote.

Life expectancy and human rights

Article 2 of the Human Rights Act protects our right to life. This means that no one, including the government, can try to end your life.

It also requires public authorities to consider this right when making decisions which could affect your life expectancy.

Our right to health is protected by the International Convention on Economic, Social and Cultural Rights (ICESCR).

It places an obligation on governments to use the maximum resources it has available to ensure all its citizens have basic access to healthcare, as well as underlying factors necessary for a healthy life.

Sources: EHRC

What Can Be Done?

The report contains a list of 25 recommendations the government must adopt "as a matter of urgency" to address the widening health gap. These include:

reducing levels of child poverty to 10 percent - in line with the lowest rates Europe

improving the quality and availability of early years services, such as Children's Centres

investing in preventative services to reduce school exclusions

developing a national strategy for reducing inequalities in health, led by the prime minister

aiming for net zero carbon emissions by 2030

reducing high levels of poor quality work and precarious employment

ensuring a healthy standard of living for all

investing in the development of deprived areas

In his foreword, Marmot endorsed a message he had written 10 years ago in his initial review:

"Health inequalities are not inevitable and can be significantly reduced... avoidable health inequalities are unfair and putting them right is a matter of social justice.

"There will be those who say that our recommendations cannot be afforded, particularly in the current economic climate.

"We say that it is inaction that cannot be afforded, for the human and economic costs are too high."

Responding to the report, Health Secretary Matt Hancock told the BBC: "There is still much more to do, and our bold prevention agenda, record £33.9bn a year investment in the NHS, and world-leading plans to improve children's health will help ensure every person can lead a long and healthy life."

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How To Tackle England's 'Increasing' Health Inequality

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A report from the Institute of Health Equity has revealed that England's life expectancy has flatlined for the first time in a century. It also found that the difference in life expectancy at birth between the least deprived 10 percent and most deprived 10 percent of areas was 9.5 years for men and 7.7 years for women in 2016-18 - up from 9.1 and 6.8 respectively in 2010-12.

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Brighton and Hove Buses has employed an Accessibility and Communities Manager

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Brighton and Hove Buses has employed an Accessibility and Communities Manager

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Mirage News 25 February 2020

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Mirage News World

Bus operator Brighton and Hove has employed an Accessibility and Communities Manager, Victoria Garcia, who is responsible for engaging with disabled people in the local community.

Working alongside disabled people and organisations that represent them, Victoria has ensured that people with a range of impairments and conditions have played a leading role in Brighton and Hove's efforts to:

install hearing loops, dementia-friendly floors and audio-visual equipment on vehicles

introduce the 'Helping Hand Card', which lets drivers know when a person needs extra help

launch the company's anti-hate crime campaign

host Travel Training sessions with the Grace Eyre Travel Foundation

provide high-quality disability equality training for drivers and customer service staff

Victoria says:

By having a designated accessibility lead, we have been able to ensure that disabled people's interests are at the core of our decision-making, with senior management and the board taking the lead.

Accessibility is taken into account in every area of the business, including vehicle design, routes and timetabling.

The operator continually receives customer feedback reinforcing the importance of being able to connect with their local bus provider.

One customer said:

After giving up my car, I thought I'd also lost my independence. Staff at Brighton and Hove buses met with me so I could privately try my wheelchair on board the bus. This simple, straightforward service means I now travel everywhere by bus and I feel confident doing so.

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/Public Release. View in full here.

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Brighton and Hove Buses has employed an Accessibility and Communities Manager

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Mirage News World Bus operator Brighton and Hove has employed an Accessibility and Communities Manager, Victoria Garcia, who is responsible for engaging with disabled people in the local community.

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Giving everyone the opportunity to live a healthy life

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Giving everyone the opportunity to live a healthy life

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A new decade brings fresh opportunities to look at how, as a nation, we can tackle inequalities in health.

Ten years on from his original report, Michael Marmot and the Institute of Health Equity have produced a new and important contribution to this debate.

The report highlights areas of continuing concern and calls for further action at many levels.

There is existing cross system activity on health inequalities but it is clear that more needs to be done.

We look forward to new commitments to addressing geographical variation in health outcomes in the Government's forthcoming response to the green paper 'Advancing our health: Prevention in the 2020s'.

And alongside this, the NHS Long Term Plan has already made a welcome and firm commitment to a more concerted and systematic approach to reducing health inequalities and addressing unwarranted variation in care."

In this blog we look at some of the work PHE is doing to reduce health inequalities, including the developing priorities set out in our new 5-year strategy for 2020-2025.

Reducing health inequalities

Reducing health inequalities means giving everyone the opportunity to lead a healthy life, no matter where they live or who they are.

It's well documented for instance that in England, people living in the least deprived areas of the country live around 20 years longer in good health than people in the most deprived areas.

As well as being unfair, health inequalities are costly, putting a strain on employment and productivity, affecting national and local economies and impacting on our public services.

So how do we tackle these unfair and avoidable differences in health across the population?

Communities and places matter

The environments in which we're born, live and work really matter for health. A good education, a decent job, a suitable roof over our head, friendships and networks to feel part of - these are the ingredients for a healthy life.

It's because these social and environmental factors are so important that local government and local areas have such a crucial role to play, forging alliances across their community that boost wellbeing and reduce inequalities.

We want to support the efforts of local areas, and with this in mind we recently published Place-Based Approaches for Reducing Health Inequalities working with our partners at the LGA and ADPH.

The set of resources provides a practical framework and tools helping places to reduce health inequalities using civic, service and community interventions.

We are now piloting support to Integrated Care Systems and Health and Wellbeing Boards across the country to adopt the tools and principles of this work.

We developed the resource further in January, publishing new research on community-centred approaches to improve health and wellbeing, an important aspect of a place-based approach to reducing inequality.

Other recent guidance focussed on place, includes our evidence summary of health inequalities among older people in coastal and rural areas and a guide to using the planning system to promote healthy weight environments.

Throughout this year we'll publish more guidance which helps local areas make the case for tackling the root causes of poor health, including a review on improving access to greenspace later this month.

Look out also for a future edition of Health Matters on housing and health, along with resources focussed on getting public health research into planning practice, and using health impact assessments in town planning, all due in the spring.

National work to narrow the health gap

PHE recently published a new 5-year strategy and in it we acknowledge that we must integrate the reduction of inequalities into everything we do in order to stand the best chance of tackling long-standing injustices and improve the health and wellbeing of the nation.

We selected our 10 priorities as they are areas where PHE is well placed to make a contribution with scope to improve outcomes and reduce inequalities.

For instance, our Smoke-free Society priority workstream will aim to reduce variation in smoking prevalence rates between socio-economic groups, particularly looking at routine and manual workers, pregnant women, people with mental health problems and people in contact with the health services.

And our Healthier diets, Healthier weight priority, which includes our food reformulation work and whole-systems approach to obesity initiative, seeks to reduce the gap in obesity rates between children from the most and least deprived areas

Our Cleaner Air priority can drive better health outcomes for vulnerable groups most affected by poor air quality and we will work towards ensuring mental health has parity with physical health, reducing inequalities in premature mortality for people with long-term and severe mental health problems through our Better Mental Health workstream.

The Marmot reports stress the importance of every child having the best start in life. To help reduce inequalities and improve health outcomes for children and families, PHE wants all mothers to experience good health before, during and after pregnancy and all children to have a happy healthy childhood. This is an ambition we'll address through our Best Start in Life priority.

This blog can only provide a snapshot so please read our 5-year strategy for a flavour of how we'll embed tackling health inequalities in the areas above, as well as our priorities on responding to incidents, AMR, predictive prevention, data and surveillance and the development of a new public health campus.

Our business plan for 2020/21, due later in the Spring, will look at our objectives as the strategy enters its first year.

Inclusion health and equalities

Tackling regional inequality is a vitally important task, but we also see differences in health linked to disability, gender, race, age, sexuality or religion or amongst members of the most vulnerable or marginalised groups in society from homeless people and sex workers to people in prison.

In our new infectious disease strategy, a companion document to our 5-year strategy, we identify pathogens which disproportionately affect groups already experiencing health inequalities.

Over the next 5 years we will build the evidence and focus on diseases that are prevalent in under-served populations including tuberculosis, blood borne viruses and other infectious diseases in homeless and prison populations.

Our work to reduce health inequalities for vulnerable groups recognises that these groups have very high needs and require targeted responses. We're currently working on projects to improve the health of rough sleepers and substance misusers including testing models that can improve the health of people sleeping rough and have a well-established Health and Justice team.

We address this further in a recent Lancet piece 'From health for all to leaving no-one behind: public health agencies, inclusion health, and health inequalities'.

Informing decisions with data

To support vital national and local action to reduce inequalities another key aspect of our work is offering a range of data.

Alongside the annual Health Profile for England which is designed to inform national policy we regularly update and improve tools like our Health Inequalities Dashboard, our Segment Tool and our Wider Determinants Tool. Our Health Inequalities Dashboard is being updated this March and will include some further analysis of geographical inequalities alongside it.

We are also refreshing our Health Equity Assessment Toolkit which helps professionals systematically assess equalities and health inequalities related to their work programmes.

Finding out more

To find out more or for further updates on this agenda please subscribe to this blog or follow us on Twitter. You may also find our Health Matters resource a useful source of information on health inequalities and the wider determinants of health. For instance, recent editions have looked at health and work and a lifecourse approach to prevention.

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Giving everyone the opportunity to lead a healthy life

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Ten years on from his original report, Michael Marmot and the Institute of Health Equity have published the 'Marmot review 10 years on' report. In this blog we look at some of the work PHE is doing to reduce health inequalities, including the developing priorities set out in our new 5-year strategy for 2020-2025.

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Locked away: the national scandal you may have missed

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Locked away: the national scandal you may have missed

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The Guardian, John Harris, 17 February

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Adele Green is a mother of four, who lives in the Northern suburbs of Bristol. I spoke to her last week about her son, Eddie, who is now 20 years old, and living in hospital in Doncaster, 180 miles from his family.

That may seem unbearable enough, but it pales into insignificance next to what Eddie has suffered elsewhere. Variously diagnosed with autism, dyspraxia, ADHD and more, he is now officially understood as having a learning disability with complex needs. As a child who liked cycling and dancing, and had the same caring nature he still displays, he moved through an array of educational placements before, in late 2012, he ended up at a now-defunct residential school near his home. As his mother told me last week, soon after arriving "he had a really big meltdown - it was something he couldn't cope with, from being at home to being somewhere completely different".

When he caused some physical damage to his immediate environment, the NHS and social care division of Bristol city council proposed that he should be sectioned under the Mental Health Act. This required the consent of his parents, who were very uncertain about whether this was the right thing to do. "But the answer was, 'If this doesn't happen, it could be taken out of your hands, and you could have your parental rights taken away,'" Adele told me. Because of an absence of hospital places anywhere near his home. Eddie was moved to a so-called assessment and treatment unit (ATU) in Northampton, run by St Andrew's Healthcare - as its online blurb puts it, "a charity providing specialist mental healthcare for patients with some of the most challenging mental health needs in the UK".

Adele's first phone conversation with Eddie came a couple of weeks after he was admitted. "He said: 'I don't like it here; they've got lockers.' I said: 'That's absolutely fine - you can keep all your things there.' He said: 'No, Mum - the lockers are for me.' " What he was describing was a seclusion room: "a bare room, with no windows. Sometimes they put in a plastic mattress. There was no toilet in the one Eddie was in: he was given a bowl."

His mother then made the first of countless weekly visits. "Eddie was brought up from downstairs as if he was a prisoner. He was so heavily sedated he couldn't lift his head up. He'd put on stones of weight; he was dribbling. He was pale. He wasn't Eddie." She tells me that on all her visits she saw bruising on his body.

Even if the more terrifying aspects of Eddie's care receded, after a spell in an NHS facility in Newcastle, he was placed in an NHS psychiatric intensive care unit (or PICU) in Salisbury, and spent six months in a so-called 136 suite, named after a section of the Mental Health Act - and what Adele calls "basically a cell". Although his standard of care has since improved, and his family are now hopeful he will soon be living near to his family home, Eddie remains sectioned.

His is one vivid and heartbreaking story in among hundreds that form one of this country's most awful national scandals, still lacking both public attention and any convincing action from government.

However much the language of diversity and human rights now echoes through public life, many in Britain have been left out, and remain the largely ignored victims of prejudice and abuse.

In England, there are more than 2,000 people with autism and learning disabilities in what officialspeak calls "inpatient care". We now know about them, and the awful cruelties and indignities many of them are suffering, because of the much-maligned mainstream media - and in particular, the tireless work of the campaigning journalist Ian Birrell. Birrell and others have highlighted not just the injustice of the way very vulnerable people are treated by local authorities, the NHS and the private contractors now woven into our public services; the scandal also speaks to something that goes even deeper. It's the fact that, however much the language of diversity and human rights now echoes through public life, many in Britain have been left out, and remain the largely ignored victims of prejudice and abuse. In different ways, people with autism and learning disabilities - two distinct categories, though about four in 10 autistic people are reckoned to satisfy the criteria for both - are still waiting for the most basic kind of emancipation. Among the many startling facts that still does not get nearly enough attention is the fact that average life expectancy for people with learning disabilities is 15 to 20 years less than the population at large.

Supposedly watershed cases of abuse inside ATUs have mounted up: 2011's Winterbourne View scandal, and last year's case centred on Whorlton Hall in County Durham. In 2013, Connor Sparrowhawk - who was autistic and had learning disabilities - died after having an epileptic fit in a bath at Slade House, an NHS-run ATU in Oxford. His family have campaigned for justice ever since. In late 2018, the wider story should have reached a tipping point when, even if identities and locations could not be established, Sky News discovered via freedom of information requests that 40 people with a learning disability or autism had died in ATUs over the previous two and a half years.

But somehow, the scandal drifted on. Last week the Equality and Human Rights Commission announced that it was taking legal action against the government, founded on ministers' possible breaching of the European convention on human rights, and the fact that it has "repeatedly missed [its] targets to improve the provision of community-based care, and to decrease the number of people with learning disabilities and autism who are currently being involuntarily detained in long-term facilities against their will".

The health and social care secretary, Matt Hancock, keeps promising to make sizeable changes but has so far failed to deliver much at all. The relevant authorities need to release much more information about cases of abuse, let alone people who have died. Basic legal injustices urgently need to be tackled: the Mental Health Act, which defines sectioning, now contains caveats for people with learning disabilities that often count for precious little at all, while no exceptions at all are made for autism, which leaves the way open to no end of abuses. There are structural stupidities in how social care is funded: if local authorities push people into the archipelago of NHS-funded mental hospitals, it relieves pressures on their finances. In turn, facilities run by private companies can maximise the revenues they get from the NHS - estimated at an average of £3,000 a week per patient - by keeping people detained at huge expense for as long as possible.

Not long after I spoke to Adele Green, I put in a call to a man called Jeremy, whose surname cannot be published. He lives in Walsall, in the West Midlands, and his campaigning on behalf of his autistic daughter, Bethany, has included defeating a gagging order attempted by his local council.
The scandalous detention of learning disabled people won't be stopped by a review | Dan Scorer
Bethany was also held in a St Andrew's Healthcare ATU from the age of 15. She was kept in a seclusion room, which Jeremy describes as a "cell", in which she was fed through a hatch. The first time her father visited her, he said: "We were led past rooms of distressed people: you go down all these corridors, and at the end is a plastic window with your child behind it." She has since begun anew in a supported living facility near Liverpool.

When I contacted St Andrew's Healthcare for a response to Bethany and Eddie's cases, a spokesman sent me an email in which he insisted that seclusion "is only ever used as a last resort"; that the criteria for treating someone in this way "follows the Mental Health Act code of practice guidelines"; and "we are committed to using seclusion for the shortest time possible". Bethany's experience of it lasted nearly two years.

Jeremy recalls that on his first visit to the St Andrew's unit "the staff member we met was crying, saying: 'This should not be happening.' But that turned into: 'This is how we are going to care for Beth.'"

Clearly the verb used in that sentence was wrong: like so many people, Bethany was the victim of a regime based not on care but on something akin to torture, and a wider system that should have long since been the subject of a huge national reckoning. The fact that it is still in place should shame us all.

* John Harris is a Guardian columnist
Topics

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Locked away: the national scandal you may have missed | John Harris

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Adele Green is a mother of four, who lives in the Northern suburbs of Bristol. I spoke to her last week about her son, Eddie, who is now 20 years old, and living in hospital in Doncaster, 180 miles from his family.

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THE TWISTED TALE OF HANSEL AND GRETEL Returns To The Belgrade Theatre

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THE TWISTED TALE OF HANSEL AND GRETEL Returns To The Belgrade Theatre

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By BWW News Desk, 19 February 2020

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THE TWISTED TALE OF HANSEL AND GRETEL Returns To The Belgrade Theatre

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Following its sell-out premiere at Birmingham Hippodrome and successful tour in 2018, Open Theatre Company's The Twisted Tale of Hansel and Gretel sets off on a brand new adventure this spring, returning to the Belgrade Theatre in March as part of its second tour.

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Care Staff Shortage Fears Over Points-Based Immigration System

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Care Staff Shortage Fears Over Points-Based Immigration System

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New government plans to close the UK's borders to low-skilled migrants will worsen staff shortages in the 'crisis-stricken' social care system, experts and unions warn.

Some of the UK's most vulnerable people could be left without care or face "unnecessary" waits in hospital, according to the United Kingdom Homecare Association (UKHCA).

The Home Office unveiled its new immigration policy on Tuesday (18 February).

It will usher in a "points-based" system, as promised in the Conservative election manifesto and will come into effect on 1 January next year.

Overseas citizens must reach 70 points to be able to work in the UK.

They gain points based on their qualifications, English-speaking ability and skills, among other factors.

Home secretary Priti Patel said the changes will bring overall numbers of migration down and will "attract the brightest and the best from around the globe".

The government has said it seeks to end a "reliance on cheap labour from Europe" and that employers must "adjust" by investing in retaining staff and developing automation technology.

The points-based immigration system

The government has proposed the following changes:

All migrants will have to speak English

UK borders will be closed non-skilled workers

Overseas citizens who want to come to the UK must have a job offer with a salary of at least £25,600, down from £30,000.

This salary threshold could drop to £20,480 in "specific shortage occupations"

There will no longer be a route for self-employed people to come to the UK

Foreign nationals wanting to work in the UK will need to have A-level qualifications or equivalent - at present they must have a degree

The cap on number of skilled workers is being scrapped

Foreign workers make up a sixth of the 840,000-strong care staff workforce in England, according to the BBC.

Their job is to care for people - who have disabilities, chronic illnesses or who are older adults - in care homes or in the community.

Health think tank the Nuffield Trust estimates an additional 90,000 workers are required to provide care to everyone who needs it.

Most people employed by the sector are low-paid and are unlikely to meet the requirements for a visa under the proposed points-based system.

John Appleby, chief economist at the think tank the Nuffield Trust, said: "Migration has been a crucial safety valve for crisis-stricken social care services, with workers from overseas filling vital roles helping people with basic tasks like washing, dressing and personal hygiene.

"Stopping migration for social care risks pushing a sector on which many vulnerable people depend over the edge."

He said that a solution could be to increase social care workers' wages, to make the profession "more attractive" to domestic workers.

But added that the sector is "on the verge of bankruptcy" and so this could not happen unless the government stumps up extra funding.

The UKHCA's policy director Colin Angel is "dismayed" by the government's decision.

"Cutting off the supply of prospective careworkers under a new migration system, will pave the way for more people waiting unnecessarily in hospital or going without care," he said.

"Telling employers to adjust, in a grossly underfunded care system, is simply irresponsible."

Councillor James Jamieson, chairman of the Local Government Association, said that "the social care system faces one of the most serious challenges and any reforms need to ensure the social care workforce can be maintained".

He added: "Salary thresholds should be variable across sector and region, to reflect the needs of different employers, alongside a reformed and devolved skills and employment system to tackle the existing national skills shortages."

Social Care and human rights

There is no specific right to social care but it touches on a number of human rights - including the rights to life, health, and the right to freedom from discrimination.

The UN Convention on the Rights of Person's with Disabilities also protects the right to "independent living".

This obliges the UK to ensure people with disabilities have access to "a range of in-home, residential and other community support services".

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Care Staff Shortage Fears Over Points-Based Immigration System

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Some of the UK's most vulnerable people could be left without care or face "unnecessary" waits in hospital, according to the United Kingdom Homecare Association (UKHCA). The Home Office unveiled its new immigration policy on Tuesday (18 February). It will usher in a "points-based" system, as promised in the Conservative election manifesto and will come into effect on 1 January next year.

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by Sui-Ling Tang from the Supported Loving Network
I met a lovely lady called Emma who is a producer working for Whistledown Productions. Emma approached me and asked if I wanted to make a radio programme called "Assisted Loving". I think she must have spoken to someone about me who had seen me in the C4 news film about relationships that I did.

I had to meet her first. We met at a coffee shop and she told me a little bit about the radio programme we were going to do.

We looked at the suggested content and the order of the information. Emma asked me quite a lot of questions about myself.

Emma later visited me at my house to do some recording. First I showed her around and then she did some recording with me about relationships. We then booked dates to do interviews with people. Emma interviewed Lloyd (my fiancé) and me. I then interviewed lots of people that included parents, a lawyer, an author, a sex worker and Claire Bates the founder of the Supported Loving network.

It was quite different to doing the TV film. It was different as we had a plan of what we were going to talk about. We recorded at two studios. One was quite small. It was quite nice in the studios.

When I recorded the voice over I practiced reading it. I had to do it a couple of times to get it right. Emma and I also made changes to get better words that people will understand. It took a long time to do. To edit and make sure that everything had been done. Then Emma told me it was the finished piece.

I have listened to it and I think I sound really different on the radio. I enjoyed doing it and meeting Emma and her colleagues at the studio.

It was good to do a thing about relationships because people will listen and hear all the good things about people having relationships. Not everyone has a relationship because some people find it difficult to meet people and form relationships and don't always get the support they need. They may not talk about it and so end up on their own.

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My experience of being a presenter for a radio 4 documentary

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by Sui-Ling Tang from the Supported Loving Network I met a lovely lady called Emma who is a producer working for Whistledown Productions. Emma approached me and asked if I wanted to make a radio programme called "Assisted Loving".

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'This show isn't about having a learning disability - it's about being human'

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'This show isn't about having a learning disability - it's about being human'

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Derbyshire Times, Gay Bolton, 16 Feb =ruary 2020

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Derby Theatre will host a touring production entitled 'a little space' from February 27 to 29 which will feature a cast of learning-disabled actors.

Set in an apartment block, this show follows the lives of five people and explores what happens when they connect and disconnect from each other, whether through choice or through isolation,

This is the first physical theatre production by Mind the Gap which has collaborated with the award-winning physical theatre company Gecko.

Karen Bartholomew, associate artist at Mind the Gap and co-creator of 'a little space' gave an insight into the production:
What can audiences expect from a little space?
Something they've never seen before! A cast of brilliantly talented learning-disabled performers telling an important tale of being alone and finding connections. A visually and sonically striking show that will give them goose bumps. It's physically demanding and emotionally honest - we put the audience at the heart of the narrative.
Can you tell us about the relationship between Gecko and Mind the Gap?
We've been 'playing together' since 2017, exploring the Gecko style and getting to know each other, both cast and creatives. This time to play has been invaluable. We've shared how each company works and found a really positive middle ground where everyone can learn from each other to create the best work possible. It's a really open and honest rehearsal room that allows us to get the best out of every aspect of the show. The devising process invites everyone in the rehearsal room to be co-authors of the show and bring their own personal experiences to the creation of the piece.
Tell us about the show, and who you think this production is for?
A bit of a cop-out but I think it's for everyone! We all experience being alone, whether we choose to be or not, and we all need connection. The show isn't about having a learning disability, it's about being human and what we need on a fundamental level to survive. We need love and we need each other. The style is also incredibly universal. We all feel, we all move, and when you bring both of those human experiences into a rehearsal room or studio, you can really start to uncover new facets in people that you never knew existed.
What are the challenges of taking a production of this scale on tour?
It's a demanding show to tour. The show itself is 65 minutes of energy, adrenaline and absolute commitment from the performers. The show has its own beautiful apartment style set, designed by Rhys Jarman, which takes two hours to build and creates its own a little space world - we really take over the space! The set is almost the sixth character in the show - it's just as important as each character and really helps us bring our show to life. It's a real team effort to get the show on the road but it's testament to both companies to see how we all pull together, as all we want is to give our audiences the best show possible.
What do you hope audiences will take away after seeing the piece?
I hope they will see themselves reflected on stage. To see moments when they think 'that's how I feel' or to empathise with the characters in front of them. Maybe they won't have seen a cast of performers with learning disabilities before and maybe this raises their expectations of what is possible. I hope this piece makes them think about how they connect with other people in their own lives. Most of all, I hope they find a connection with the show and feel moved by what they see in some way.

Tickets to see 'a little space' are priced from £19.50 and the show has a recommended age range of 12+. To book, call 01332 593939 or go to www.derbytheatre.co.uk

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'This show isn't about having a learning disability - it's about being human'

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Derby Theatre will host a touring production entitled 'a little space' from February 27 to 29 which will feature a cast of learning-disabled actors. Set in an apartment block, this show follows the lives of five people and explores what happens when they connect and disconnect from each other, whether through choice or through isolation, This is the first physical theatre production by Mind the Gap which has collaborated with the award-winning physical theatre company Gecko.

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Health secretary is threatened with legal action over treatment of people with learning disabilities and autism

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Health secretary is threatened with legal action over treatment of people with learning disabilities and autism

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BMJ 2020

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The Equality and Human Rights Commission has launched a legal challenge against England's health and social care secretary, Matt Hancock, over a repeated failure to move people with learning disabilities and autism into appropriate accommodation.

The commission is a statutory non-departmental public body that safeguards and enforces the laws protecting people's rights to fairness, dignity, and respect. It said that it had longstanding concerns about the rights of more than 2000 people with learning disabilities and autism who were being detained ...

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Health secretary is threatened with legal action over treatment of people with learning disabilities and autism

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The Equality and Human Rights Commission has launched a legal challenge against England's health and social care secretary, Matt Hancock, over a repeated failure to move people with learning disabilities and autism into appropriate accommodation. The commission is a statutory non-departmental public body that safeguards and enforces the laws protecting people's rights to fairness, dignity, and respect.

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Patients with learning disabilities being 'chemically restrained', report finds

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Patients with learning disabilities being 'chemically restrained', report finds

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ITV News 2020 James Crichton-Smith

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Many patients with learning disabilities in Wales are being 'chemically restrained' with psychiatric medication, a report has revealed.

The document, seen by ITV Cymru Wales, said: "many patients with learning disabilities and behaviour which challenge will be subject to high rates of medication, the primary role of which is to act as a behavioural suppressant rather than a treatment."

The report also found in some cases patients are being prescribed mood stabilisers - drugs meant for those with mental health conditions - when no official mental health diagnosis exists.

Zoe Richards, Learning Disability Wales chief executive said the use of mediation to control people with learning disabilities is "scandalous".

Ms Richards added: "What we need to understand is what levels of support or interaction people need. For some, that is not medical interaction."

The report stated: "This National Care Review found that overall 46 patients (28 per cent) were prescribed mood stabilisers in some form.

"17 (37 per cent) of the 46 patients who were prescribed mood stabilisers had no recorded primary or secondary diagnosis of mental illness."

It found "118 patients who were prescribed anxiolytics, sedatives or hypnotics had no recorded primary or secondary diagnosis of mental illness."

A series of recommendations have been set out, including one calling for the Welsh Government to reduce inappropriate use of psychotropic medication.

The Welsh Government said prescribing is a ''matter for health professionals," but said health boards must review their prescribing protocols and ensure it forms part of a ''holistic approach''.

This can include therapeutic interventions, such as occupational therapy and psychosocial interventions.

The paper also revealed that some people with learning disabilities are spending nearly 50 years in a hospital setting - despite it saying "hospitals should not become anyone's 'de facto home'".

It detailed how "the shortest length of stay was 2 days at the time of audit whilst the longest was 18023 days, or 49 years and 3 months."

"32 patients (19 per cent) had a length of stay longer than 10 years."

The report said moves should be made to "ensure that no hospital bed is classed as an individual's home".

On the lengths of hospital stay being experienced by some, Zoe Richards added: "It is important that we understand that for someone to spend this length of time at a hospital, that is going to ensure that they are institutionalised."

She added: "It is quite a devastating discovery that people have spent that length of time essentially in hospital bed when they are not ill and that's fundamentally what we are talking about here.

"Learning disability is not an illness, it's part of their character, it's how they identify."

The Welsh Government said health boards will now assess their local services.

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patients with learning disabilities being 'chemically restrained'

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Patients with learning disabilities being 'chemically restrained', report finds

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Many patients with learning disabilities in Wales are being 'chemically restrained' with psychiatric medication, a report has revealed. The document, seen by ITV Cymru Wales, said: "many patients with learning disabilities and behaviour which challenge will be subject to high rates of medication, the primary role of which is to act as a behavioural suppressant rather than a treatment."

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Supreme Court hearing on sleep-in care workers case gets under way

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Supreme Court hearing on sleep-in care workers case gets under way

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Third Sector, Liam Kay, 12 February 2020

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The Supreme Court today heard the beginning of an appeal against the decision to deny sleep-in care workers the minimum wage when on call, saving charities an estimated £400m.

The case, which is expected to last two days, is the latest in a long-running battle about the legal status of sleep-in care workers, who often stay overnight with vulnerable people in case of emergencies.

In 2018, the Court of Appeal overturned the decision of a 2015 employment tribunal that found former Mencap care worker Claire Tomlinson-Blake was entitled to receive the national minimum wage for each hour of sleep-in shifts completed, plus six years of back payments.

Charities had previously typically paid sleep-ins a flat rate of between £35 and £45, plus an hourly rate for any time spent providing care rather than being asleep.

An appeal against the Court of Appeal's decision was lodged in August 2018 by the trade union Unison, with the Supreme Court giving the go-ahead in February 2019 for the case to return to court.

Mencap has estimated that if the rules were changed to allow back pay for affected workers, it could cost the social care sector £400m and £20m for Mencap specifically.

It is not yet known when the Supreme Court will publish its decision on the case.

Matthew Wort, partner at Anthony Collins Solicitors, who helped Care England in its intervention in the Court of Appeal case, said the Supreme Court should support the Court of Appeal's decision.

"This case is not about what care workers should be paid," he said. "Rather, it is focusing on the interpretation of national minimum wage regulations.

"The law appears to make it clear that employees are not working while asleep and government guidance in place for many years backed that up.

"It is not the Supreme Court's role to decide on public policy grounds what the law should be, but to interpret the legislation to reflect the intention of parliament when the regulations were introduced.

"For that reason, I consider it should accept that time spent asleep during a sleep-in shift does not attract the national minimum wage."

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Supreme Court hearing on sleep-in care workers case gets under way

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The Supreme Court today heard the beginning of an appeal against the decision to deny sleep-in care workers the minimum wage when on call, saving charities an estimated £400m. The case, which is expected to last two days, is the latest in a long-running battle about the legal status of sleep-in care workers, who often stay overnight with vulnerable people in case of emergencies.

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Equality and Human Rights Commission takes first legal step over the 'inappropriate inpatient care' of more than 2,000 people

Matt Hancock has received legal action that the Department of Health and Social Care has breached the European Convention of Human Rights (Photo: ISABEL INFANTES/AFP/Getty)

Health Secretary Matt Hancock is facing legal action over the "repeated failure" to give people with learning difficulties and autism the appropriate accommodation.

The Equality and Human Rights Commission (EHRC) has taken the first step towards mounting a legal challenge over the "inappropriate inpatient care" of more than 2,000 people. It has sent a pre-action letter to Mr Hancock, arguing that the Department of Health and Social Care (DHSC) has breached the European Convention of Human Rights (ECHR).

The body says the department has failed to meet NHS targets to move patients to community-based settings, and to reduce the reliance on inpatient care of people with learning disabilities and autism. An inquiry into the often long-term detention of young people with learning disabilities or autism is ongoing.

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Rebecca Hilsenrath, EHRC chief executive, said: "We cannot afford to miss more deadlines. We cannot afford any more Winterbourne Views or Whorlton Halls.

"We cannot afford to risk further abuse being inflicted on even a single more person at the distressing and horrific levels we have seen. We need the DHSC to act now.

"These are people who deserve our support and compassion, not abuse and brutality. Inhumane and degrading treatment in place of adequate healthcare cannot be the hallmark of our society. One scandal should have been one too many."

The DHSC has 14 days to respond to the letter, which says that legal action will be postponed for three months if the department agrees to produce a timetabled plan on how to address the issues. If the DHSC does not agree to this, the EHRC will apply to the High Court for a judicial review.

The body is also calling for an enforceable right to independent living for disabled people and said it has developed a legal model to incorporate it into domestic law.

A Department of Health and Social Care spokesperson said: "We are committed to protecting the rights of everyone with a learning disability or autism, and are determined to continue reducing the number of people with these conditions in mental health hospitals.

"Abuse of any kind against patients in care is abhorrent and we take any allegations very seriously.

"We have received the pre-action letter from the ECHR today and will respond in due course."

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Matt Hancock facing legal challenge over 'repeated failures' in autism care

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Matt Hancock has received legal action that the Department of Health and Social Care has breached the European Convention of Human Rights (Photo: ISABEL INFANTES/AFP/Getty) Health Secretary Matt Hancock is facing legal action over the "repeated failure" to give people with learning difficulties and autism the appropriate accommodation.

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The newsletter from Possability People

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From today (16 January) online pledges for the Health Charter will come to a close. The Health Charter, which was co-produced by VODG and its members, Public Health England and sector stakeholders, helped social care providers to improve the wellbeing of people with learning disabilities, and help reduce inequalities in health and social care.

Originally launched in 2014, the charter was revised in 2017 and social care providers were encouraged to publicly pledge their support to tackle health inequalities experienced by people with a learning disability.

Funding to manage Health Charter pledges came to an end in 2017. VODG has now closed online pledging and would like to thank all providers that have committed their support.

VODG continues to encourage organisations to access resources, include the health charter, on tackling health inequalities via this link.

All data associated with the Health Charter has been deleted.

Alongside this notification to social care providers, local council and health commissioners are invited to review contracts that reference the health charter and the ways in which providers evidence how they are tackling health inequalities.

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Pledging for Health Charter comes to an end

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From today (16 January) online pledges for the Health Charter will come to a close. The Health Charter, which was co-produced by VODG and its members, Public Health England and sector stakeholders, helped social care providers to improve the wellbeing of people with learning disabilities, and help reduce inequalities in health and social care.

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Community Living, Jan Warmsley, 10 January 2020

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Accessible Hustings General Election: 2019 BBC Report

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Accessible Hustings General Election: 2019 BBC Report

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BBC 5 December 2019

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Accessible Hustings General Election: 2019 BBC Report

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Film screening for intellectual disability awareness

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Film screening for intellectual disability awareness

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Wflix, February 3, 2020

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A local man with a learning disability is going to great lengths to help other people like him live their best life.

Michael Lincoln, a St. Lucie County resident, teamed up with staff at Indian River State College and his Best Buddies group to help put on a screening of the film 'Intelligent Lives' to recognize Disability Awareness day.

According to Lincoln and IRSC staff, the film follows the lives of three adults with intellectual disabilities as they go through high school, college, and their careers.

It was their final day to put all the finishing touches on their plan for the screening.

"I just want people to come with open hearts and to accept the message because honestly, it's a good thing for people with special needs," Lincoln said.

Lincoln has been an advocate for people with special needs and intellectual disabilities after going through his own struggles when he was under the watch of a state-issued guardian.

"It all comes back to my story when I was in a guardianship and I was mistreated and taken advantage of as a person with a disability," Lincoln said.

With the help of a strong support group, he has won legal fights to allow him to live mostly independently, helping him make more of his own decisions.

"I never thought in a million dreams that I would be a security guard for the state and the fact that I accomplished that goal is a big deal," Lincoln said.

The film, he hopes, will inspire the community to be more supportive of people like him.

The screening begins at 3:30 at the Kight Center, or building 'V' at the Fort Pierce Indian River State College campus. It is free and open to the public.

Scripps Only Content 2020

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Film screening for intellectual disability awareness

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A local man with a learning disability is going to great lengths to help other people like him live their best life. Michael Lincoln, a St. Lucie County resident, teamed up with staff at Indian River State College and his Best Buddies group to help put on a screening of the film 'Intelligent Lives' to recognize Disability Awareness day.

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Disabled People Face Cuts To Social Care As Providers’ Funds Plummet

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Disabled People Face Cuts To Social Care As Providers’ Funds Plummet

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Each Other, Meka Beresford, 4 February 2020

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Social care providers making cuts to the number of people they can care for has doubled in the last year due to lack of funding.

Independent research by Hft, a national charity supporting adults with learning disabilities reveals social care providers are struggling to cope with spiraling costs resulting in cut-backs.

Over a third of providers said they balanced the books by making cuts to staff, while over half reported closing down whole sections of the organisation and handing back contracts.

Care providers warned that a lack of financial stability will have an impact on the quality of care.

Billy Davis, Public Affairs and Policy Manager for Hft, said: "The sad reality is that the social care sector has run out of options.

"While in the previous report providers were focusing on streamlining through internal efficiency savings, we can now clearly see that cuts are affecting people, not just processes."

Sustainability

Mr Davis said: "The lack of a sustainable cash injection for the sector has seen providers resorting to offering care to fewer people to manage spiraling costs at a time when demand for social care is widely acknowledged to be growing."

Defending decisions made providers he said: "They had no choice but to make decisions culturally at odds with the way they want to run their organisations.

"Given the fragility of the social care sector, there's never been a more important time to hear the views of the people providing care for some of the most vulnerable in society.

He added: "This report is an opportunity to hear the collective voices on the issues facing the sector and we must listen. It's clear that at its heart social care funding is, and continues to remain, a national issue that requires a national solution".

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Disabled People Face Cuts To Social Care As Providers' Funds Plummet

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Independent research by Hft, a national charity supporting adults with learning disabilities reveals social care providers are struggling to cope with spiraling costs resulting in cut-backs. Over a third of providers said they balanced the books by making cuts to staff, while over half reported closing down whole sections of the organisation and handing back contracts.

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Today Care England has accused the government of betraying thousands of vulnerable autistic people and those with learning disabilities

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Today Care England has accused the government of betraying thousands of vulnerable autistic people and those with learning disabilities

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Happyful, Bonnie Evie Gifford, 4 February 2020

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Today Care England has accused the government of betraying thousands of vulnerable autistic people and those with learning disabilities

According to the latest figures, more than 2,000 autistic adults and those with learning disabilities who require specialist accommodation are in hospital or inappropriate assessment centres across the country. Many stay in such facilities for months due to flawed policy on care homes and inflexible bureaucracy.

Regulators have imposed a limit - which some are calling arbitrary - on care homes, stopping them from offering more than six places for adults with learning difficulties on one site. Registered charity Care England is now demanding action to solve this crisis.

Care England is the leading representative body for independent care services in England. Chief Executive of Care England, Professor Martin Green OBE, commented:

"How can it be right that 2,000 of the most vulnerable people in our society are being left in totally unsuitable institutions, simply because of petty, inflexible red tape.

"Care homes are ready and willing to provide specialised and suitable accommodation but are prevented from doing so by this 'six only' rule. It's nothing short of betrayal.

"Thousands of adults with autism or learning disabilities are in unsuitable hospitals or assessment centres - often many miles from their families - when they could be in specialist units close to their homes and loved ones."

A concerningly high number of people with learning disabilities are inappropriately admitted to Assessment and Treatment Units (ATUs). Intended to be used when someone is sectioned under the Mental Health Act, these are designed to be used as short-term facilities until individuals are able to return home, or appropriate placements are found for them.

We need to change the system so that the decision makers no longer get to benefit from their own decisions. https://t.co/nqRgoi4CN8
- Rightful Lives (@RightfulLives) January 19, 2020

VoiceAbility suggests around 3,000 people with a learning disability or who are on the autistic spectrum are currently living in inpatient facilities including ATUs and hospitals. For many, this can be frustrating, as the process can feel slow or uncertain.

Care England is calling for the CQC to scrap the six-bed limit for facilities, and focus on the support that can be offered for each individual. Professor Martin Green said: "The current interpretation to only look at bed numbers is short-sighted. This will lead to a much more suitable solution for those in our society who need help and offer them a choice."

Many argue that specialised learning disability homes can offer a chance to live in a safe, social community environment that can provide tailored help to best suit individual needs - something that ATUs are unable and unsuitable to provide.

This isn't the first time individuals and organisations have sought to bring the inappropriate use of ATU's into the spotlight. A petition gathered over 45,000 signatures, calling for the government to stop the detention of autistic people and those with learning disabilities in ATU's. The government responded in 2018, saying that "We agree that people with autism and learning disabilities should not be inappropriately detained in mental health hospitals."

The release of this statement followed the publication of a report into the detention of young people with learning disabilities and/or autism in November 2019. Highlighting the harm caused by such detention, as well as the ways in which families of young people who had been detailed felt like their voices were not being heard, the report went on to highlight the breakdown in communication between families and healthcare centres. According to the report:

"We are failing to protect some of the most vulnerable young people - those with learning disabilities and/or autism. We are inflicting terrible suffering on those detailed in mental health hospitals and causing anguish to their distraught families."

Describing the upsetting situation that many families find themselves in, the report outlines how many parents struggle to receive early diagnosis or support throughout childhood and adolescent. When a vulnerable young person reaches 18, a small family struggle or upset to routine can lead to families reaching out for help, and professionals making decisions without their involvement.

"...parents are not asked for their views. Then the child is taken away from their home and the familiarity and routine which is so essential to them. They're taken miles away and placed with strangers. The parents are desperately concerned. Their concerns are treated as hostile and they are treated as a problem. The young person gets worse and endures physical restraint and solitary confinement - which the institution calls 'seclusion'. And the child gets even worse so plans to return home are shelved. The days turn into weeks, then months and in some cases even years."

The look into the current situation faced by those with learning disabilities came after the release of the BBC One Panorama investigation, Undercover Hospital Abuse Scandle in May 2019. Reporter Olivia Davis revealed upsetting footage of autistic patients and those with learning disabilities being deliberately provoked by staff who would then physically restrain them. Revealing a culture of patients being taunted, mocked, and intimidated by abusive staff, this was not the first time the Panorama team exposed abuse by the system. Eight years prior, another specialist hospital, Winterbourne, was exposed to have a pattern of serious abuse and a systemic failure to protect patients.

In 2015, Transforming Care was launched by the Government and NHS England. Making the promise that they would ensure the right services were available in the local community so people would not be stuck in inappropriate in-patient hospitals, the system has since failed to live up to these promises. According to the National Autistic Society, the number of autistic people living in these units increased by almost 40% between 2015-17, with further concerning stories of seclusion, over-medication, and restraint continuing to come forward.

Bethany is autistic and has spent time as a patient in a psychiatric hospital.

We have funded Bethany's case to make sure that her human rights are respected. It has the potential to help other families in similar circumstances.

Watch this short film to find out more ⬇️🎞️ pic.twitter.com/z9tN4MfhyL
- EHRC (@EHRC) July 31, 2019

What can I do to help?

If someone you know with a learning disability or on the autistic spectrum has been detained in an ATU or hospital for a prolonged period of time, advocacy may be able to help. Advocates can help individuals to challenge professionals, raise awareness of their situation, and ensure that professionals remain focused on the individual's care, wishes, needs, and aims. Most people who have been sectioned under the Mental Health Act are entitled to an Independent Mental Health Advocate. For those who lack the capacity to make particular decisions, they may be entitled to an Independent Mental Capacity Advocate.

If you are currently undergoing a Care & Treatment Review, Bringing Us Together has created a series of survival guides to help families.

In December 2019, MPs said that they believe the biggest barrier to progress with the current system is a "lack of political focus and accountability". With so many issues in our turbulent political climate, it can be easy for things to get overlooked or to become lost in the overwhelming barrage of news we receive each day. It's time we hold the government accountable for both their promises, and for their responsibility to ensure all individuals receive safe, appropriate treatment and support where needed.

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Government Accused of Betraying Those With Learning Disabilities

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According to the latest figures, more than 2,000 autistic adults and those with learning disabilities who require specialist accommodation are in hospital or inappropriate assessment centres across the country. Many stay in such facilities for months due to flawed policy on care homes and inflexible bureaucracy.

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Fewer Disabled People Get Care as Providers 'Run out of Options' 

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Fewer Disabled People Get Care as Providers 'Run out of Options' 

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The Guardian, David Brindle 4 February 2020

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Growing numbers of providers of care for disabled people say they have run out of options to cut costs and have started to reduce the numbers they are able to support.

One in five organisations responding to an annual survey of providers said they had offered care to fewer people last year, with an average reduction of 8%. One in three said they had cut jobs by an average 4%.

The findings from the Sector Pulse Check, commissioned by learning disability charity HFT, offer a stark reminder that the crisis in social care extends far beyond funding and services for older people, which appears to be the focus of concern in government as ministers prepare to honour their general election pledge to "fix" the crisis.
It'll cost Johnson £14bn to keep his promises on social care. Will Javid pay up? | Polly Toynbee
Billy Davis, public affairs and policy manager for HFT, said the survey previously found providers avoiding reductions in services by making internal savings. But the scope for efficiencies is shrinking and providers are being left with no alternative but to take decisions "culturally at odds" with their principles and missions.

"The lack of a sustainable cash injection for the sector has seen providers resorting to offering care to fewer people to manage spiralling costs at a time when demand for social care is widely acknowledged to be growing," he said.

The latest, third, edition of the survey covers 77 providers of care mainly for people with learning disabilities but also for those with physical disabilities and for older people. Relatively fewer organisations were found to have made internal efficiencies in 2019 (79%, compared with 92% in 2018), closed down functions and/or handed back contracts (45%, compared to 59%), curbed investment (39%, compared with 45%), or reduced scope of services (24%, compared with 35%).

However, broadly the same proportion of organisations was found to have shed staff (33%, compared with 35%) and there was a striking rise in the number that had offered care to fewer people (20%, compared with 8%), with 29% expecting to do so in future.

Davis said HFT was among those that had resorted to cutting numbers of people supported. "We have had to make some very difficult decisions ourselves in terms of which services are viable and which are not and where we need to look at doing things differently."

The survey also found that 43% of providers acknowledged a drop in the quality of services they provided. This was shown most frequently in a rise in safeguarding incidents and lower satisfaction levels reported by people receiving support and their families. Some providers - 14% - admitted to planning a reduction in quality in future to cut costs.

One organisation said in its survey response: "It has never been harder to do what we do. There are no policy solutions on the horizon for supporting people with disabilities to lead better lives."

In a related development, Care England, which represents larger care providers, has accused the government of "betraying" the 2,000 people with severe learning disabilities and autism who are stuck in supposedly short-stay hospitals by not allowing them to move to social care facilities with more than six beds.
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Martin Green, Care England chief executive, said the limit is being applied by the Care Quality Commission (CQC) inspectorate in a misguided assumption that smaller care settings are always more homely. "Care homes are ready and willing to provide specialised and suitable accommodation but are prevented from doing so by this crazy 'six only' rule," he said. "It's nothing short of betrayal."

Kate Terroni, the CQC's chief inspector of adult social care, said best practice indicates that smaller settings "usually accommodating six or less" are preferable for people who may display behaviour that challenges, but there is no rigid rule and other factors such as staff skills, management effectiveness and the proposed care model are also taken into account when deciding to register a service.
Topics

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Fewer disabled people get care as providers 'run out of options'

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Growing numbers of providers of care for disabled people say they have run out of options to cut costs and have started to reduce the numbers they are able to support. One in five organisations responding to an annual survey of providers said they had offered care to fewer people last year, with an average reduction of 8%.

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Learning Disability England, 3 February 2020

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What does a Good Life for people with a learning disability look like in this new decade?
Learning Disability England wants to work with people, groups and organisations to talk about what we know people with learning disabilities and / or autism want so they can live a good life.

There has been lots of research over the years and we believe the time has come to take action together. We believe the power of change lies in you, our membership, talking and working together to work out what you agree on and can take action on together.

This must be a plan everyone can get involved in and feel part of. We think it is really important that self advocates - people with a learning disability and / or autism - lead this work. This must not be a plan only for Learning Disability England but something everyone can use.
Why we are doing this?
We are doing this because people have told us there needs to be more joined up action - people working together - to make a real difference.

Lots of people told us they want to work with other people or groups to change things.
What Learning Disability England will do
We will help bring people together, connect ideas or pieces of work.

We will start by asking some people with learning disabilities to come to a meeting on 19th February 2020. At that meeting we will agree with them the most important things to work on and how we should work.
How to get involved
Please tell us if you want to be part of this work, and if you have any good work you want to share with others.

If you are a self-advocate, you can do that by coming to the meeting in February. If you want to know more about that please
contact us on the phone number or email address below.

We also ask everyone - whether you are a member or not - to please fill in a short survey on line HERE

To find out more, you can contact us by phoning or e mailing our office: info@LDEngland.org.uk or 0300 1110444, or by clicking on these links:
We will be in touch again in March to tell you about what the self-advocates meeting agreed.

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What does a Good Life for people with a learning disability look like in this new decade? Learning Disability England wants to work with people, groups and organisations to talk about what we know people with learning disabilities and / or autism want so they can live a good life.

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The sports challenge changing the lives of people with learning disabilities

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The sports challenge changing the lives of people with learning disabilities

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Leicestershire Live, Asha Patel, 2 F,ebruary 2020

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A pioneering sports challenge designed for people with learning disabilities has launched in Leicester.

The Round the World Challenge, launched by Mencap, Sport England and The National Lottery, was created to tackle exclusion, isolation and to get people active.

It was hosted by the VALUES team at Voluntary Action LeicesterShire (VAL) who are dedicated to supporting those with learning disabilities.

People with a learning disability have a lower life expectancy than the rest of the general public - 27 years lower for women and 23 years lower for men. This can stem from other inequalities that restrict mobility, confidence and healthcare.

Regional project manager for the Round the World Challenge, Jon Stonebridge said: "Of course the main part of this is the health benefits but it also builds confidence and develops social wellbeing.

"This will address those inequalities."

The programme invited people to partake in different activities turning hours of sport into a 'round the world' adventure.

Three different routes include 20, 40 and 100 hours of activity amounting to a trip around the UK, Europe and the whole world respectively.

On a weekly basis, participants will be able to do basketball, football, archery and more to complete their journey before either progressing into coaching, volunteering, joining an employment programme or aiming to stay active.

Leicester Tigers rugby player, Harry Wells attended to support the launch event.

"It's great to see anyone getting involved in sport and there's a real sense of community here," he said.

Katie Hasman had previously struggled with mental health issues but said the challenge as well as other VALUES activities has helped.

"The people here welcome you with open arms and they don't judge you.

"I was excited about this because people have been talking about it for a while," she said.

Russell Ingram has been a long standing participant of Mencap sports sessions and is now working towards 100 hours of activity.

"My favourite sport is basketball - I've had lots of support here and it's a positive place for making friends," he said.

Thanks to the VALUES team, the 45-year-old helps out at the Sandwich Station, a sandwich shop in the city centre that helps people with learning disabilities develop workplace skills.

For Umar Pardesi, 36, it was the first time he took part in a sporting challenge of any kind.

He said: "I've done basketball, badminton and everything.

I've really enjoyed it and it feels really good to make new friends."

Mikaela Paterson has been a VALUES team member for 10 years.

She said: "This will give access to things that people take for granted.

"A lot of the people here can't get out and about without some kind of support so they miss out on the physical activity and it can be incredibly isolating.

"The social element of this is one of the biggest parts."

Round the World invites groups or individuals of any age and ability to take part. To get involved you can email sport@mencap.org.uk

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The people who have had their lives changed by challenge

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A pioneering sports challenge designed for people with learning disabilities has launched in Leicester. The Round the World Challenge, launched by Mencap, Sport England and The National Lottery, was created to tackle exclusion, isolation and to get people active. It was hosted by the VALUES team at Voluntary Action LeicesterShire (VAL) who are dedicated to supporting those with learning disabilities.

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The Cornwall-based dating service for people with learning and physical disabilities

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The Cornwall-based dating service for people with learning and physical disabilities

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Cornwall Live, Lisa Letcher, 1 February 2020

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A Cornwall dating service wants to help people with disabilities find lasting love and companionship.

Hand in Hand was founded by 29-year-old Cornish man Samuel Gillaspy who said he noticed a specific need for this type of service throughout his many years working with disabled people.

Sam, who lives in Penzance, has worked in the learning disability sector for over a decade and is trained in specialities such as epilepsy, first aid, mental health, autism and acquired brain injuries.

But during his time he had noticed that often disabled people were unsuccessful in their search for long-term companionship and found it difficult to find love on mainstream dating apps.

"At a home I worked in, me and a couple of colleagues were asked by a resident if we could help him open a dating account which ended up not going very well.

"That sparked a conversation over whether it would be good if there was a niche site, site for people specifically with disabilities in Cornwall and what started as just a conversation ended up in me taking that further."

After a lengthy planning process, Hand in Hand was setup in 2019 and Sam began providing individual support and guidance - without the computer algorithm.

Sam said it was important for him to not have a database of people that can all access each others profiles because of the sensitive nature of the information discussed.

"A lot of people don't know how to socialise with people with disabilities in a way and it is difficult to look at people with a disability and understand exactly what that means.

"A lot of people generally don't spend time around people with disabilities."

Enjoy reading stories like this?

Sam's approach allows him to get to know clients and gain a deeper understanding of what the individual is looking for in order to match them up with someone like-minded.

He says he also provides constant one-on-one support as well as advice on finding a safe-zone for them to meet or he offers to join couples on the first date as a chaperone.

"Think about how difficult it is being on a first date regardless. Then imagine that with being on the autism spectrum or having any other kind of physical or learning disability.

"Sometimes there is so much excitement building up to that meeting that it is important to have someone be there and help people along because dating is hard under any circumstances."

When people sign up to Hand in Hand they are required to add information to a bio so that Sam can get an insight into that individuals interests and aspirations.

He then might arrange to ask some further questions that will aid in the matchmaking process.

Hand in Hand also hold a seasonal event where people can attend even if they are not signed up to the website as a way of meeting new people.

"We offer a dedicated service for finding you the companionship that you are searching for and undoubtedly deserve.

"Specialising in match-making for clients who are differently abled, we personally search through all of our other lovely members to hand pick potential matches for you, based on your hobbies, aspirations and preferences."

For more information you can visit the website here.

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Dating service wants to find love for people with disabilities

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A Cornwall dating service wants to help people with disabilities find lasting love and companionship. Hand in Hand was founded by 29-year-old Cornish man Samuel Gillaspy who said he noticed a specific need for this type of service throughout his many years working with disabled people.

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Grace Eyre January 2020,

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How can we advocate for the sexual needs and identities of people with a learning disability?

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How can we advocate for the sexual needs and identities of people with a learning disability?

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Community Care,Andrew Hodkin
30 January 2020

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How can we advocate for the sexual needs and identities of people with a learning disability? - Community Care

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When a private life is often almost impossible to maintain due to care needs, how can the sexual identity and expressio

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Researcher says ADHD sufferers deserve disability payments

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Researcher says ADHD sufferers deserve disability payments

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Stuart Lyat

January 29, 2020 — 12.01am

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A self-confessed former "ADHD-sceptic" researcher is calling for the condition to be listed as an official disability after conducting a review of the studies on the issue.

Associate Professor Helen Boon from James Cook University has published a research review looking at 174 neuroimaging studies from around the world that used brain scanning imaging such as MRI to compare the brains of attention deficit hyperactivity disorder (ADHD) sufferers with a control group.

A child behaviour expert is calling for ADHD to be considered a disability and sufferers given access to assistance payments. Credit:File image

She said in every study the brains of ADHD children were found to have significant neural anatomical and processing differences compared with the control group.

"I was a sceptic, I thought this review would unearth some clarity about what was actually going on regarding ADHD," Dr Boon said.

"I didn't expect to find that there would be so much difference [between sufferers and the control groups], I expected they would be all the same, but I found the exact opposite."

Dr Boon, who teaches in the areas of educational psychology, special needs and behaviour management, said the findings were especially stark given she also looked at teachers' attitudes to ADHD in the same paper and found some were dismissive of ADHD.

She had many people tell her anecdotally that teachers were still treating ADHD symptoms as children being "naughty".

"It seems there are a lot of people out there who don't understand this is an actual condition just like visual impairment or a physical impairment," she said.

"And sufferers need support that is targeted to their difficulties."

About 1.2 million people or one-in-20 across Australia are estimated to have ADHD, which can cause symptoms including inattention, distractibility, hyperactivity and impulsivity.

While children with the condition often struggle in school, it is not considered a learning disability in any state or territory.

Dr Boon said just like those with a recognised disability, ADHD sufferers had a condition that acted as a barrier to their education and deserved access to support payments and services in line with the severity of their case.

"I think it's important that teachers understand the condition so they can observe their students and help with diagnosis if need be," she said.

"I think teachers are instrumental in advocating for the students, but in order for them to do so they need to have the correct information."

The review of research into teachers' attitudes included at least one previous review of the available data done in 2019.

The research has been published in the journal Child & Youth Care Forum.

Stuart Layt covers health, science and technology for the Brisbane Times. He was formerly the Queensland political reporter for AAP.

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Researcher says ADHD sufferers deserve disability payments

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Normal text size Larger text size Very large text size A self-confessed former "ADHD-sceptic" researcher is calling for the condition to be listed as an official disability after conducting a review of the studies on the issue.

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Novel insight into chromosome 21 and its effect on Down syndrome

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Novel insight into chromosome 21 and its effect on Down syndrome

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UNIVERSITY COLLEGE LONDON 28 January

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A UCL-led research team has, for the first time, identified specific regions of chromosome 21, which cause memory and decision-making problems in mice with Down syndrome, a finding that provides valuable new insight into the condition in humans.

Most people have 46 chromosomes in each cell, divided into 23 pairs: people with Down syndrome (DS) have an extra copy of chromosome 21, which carries over 200 genes.

In this study, published in Cell Reports, researchers at UCL, supported by Cardiff University and the Francis Crick Institute, used mouse models to try and find out how having these extra genes causes learning disability.

Chromosome 21 and its genes are also found in mice, although the genes have dispersed onto three smaller regions on three different mouse chromosomes. These are mouse chromosomes 16, 10 and 17 containing 148 genes, 62 genes and 19 genes respectively.

The researchers looked at the effect of the genes in each of these three different mouse regions (chromosomes) on learning and memory. To do this three different mouse strains (groups of mice), were genetically modified to carry an extra copy of one of the gene groups on mouse chromosomes 16, 10 or 17.

During navigation tests, where mice needed to negotiate a simple 'left-right' T-maze, each group was measured for both memory and decision-making ability.

During these tests, the electrical activity of brain regions important for memory and decision making was also monitored, using an electroencephalogram (EEG).

The researchers found that one of the mouse strains ('Dp10Yey' mice) had worse memory, and had irregular brain circuity (signals) in a part of the brain called hippocampus - which is known to be very important for memory.

They also found another strain ('Dp1Tyb' mice) had worse decision-making ability and had poor brain signalling between the hippocampus and the pre-frontal cortex - needed for planning and decision-making. And the third strain ('Dp17Yey' mice) had no unusual electrical activity in the brain.

Co-author, Professor Matthew Walker (UCL Queen Square Institute of Neurology), said: "These findings are a complete surprise - we did not expect the three different gene groups would act completely differently.

"Scientists have traditionally worked on the hypothesis that a single gene, or single genes, was the likely cause of intellectual disabilities associated with Down syndrome.

"We have shown - for the first time - that different and multiple genes are contributing to the various cognitive problems associated with Down syndrome."

Researchers will now look to discover specifically which gene or genes, within the smaller gene groups, are responsible for impaired memory and decision-making.

Corresponding author Professor Elizabeth Fisher (UCL Queen Square Institute of Neurology) said: "Our study provides critical insights into the mechanisms underlying neuro-disability in Down syndrome and indicates that intellectual disability in Down syndrome may result from different underlying genetic, functional and regional brain abnormalities.

"This implies that therapies for people with Down syndrome should perhaps target multiple processes, and we have made the initial steps in identifying what some of these processes are."

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Study note: Mouse strains Dp1Tyb, Dp10Yey and Dp17Yey were genetically modified to carry an extra copy of one of the gene groups on mouse chromosomes 16, 10 and 17 respectively.

Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.

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Novel insight into chromosome 21 and its effect on Down syndrome

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A UCL-led research team has, for the first time, identified specific regions of chromosome 21, which cause memory and decision-making problems in mice with Down syndrome, a finding that provides valuable new insight into the condition in humans.

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University of Southamptom Looking to recruit young people now!

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University of Southamptom Looking to recruit young people now!

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Abigail Soton 14 January 2020

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Looking to recruit young people now!

Interested in taking part?

Take a look at the information video

Information for young people here

Information for family, allies and friends here

Posted in Tags: Uncategorized people with intellectual disabilities, people with learning disabilities, work and people with learning diabilities

looking at work and learning in the lives of young people with intellectual and developmental disabilities

Roughly 93% of people with intellectual and developmental disabilities have no paid employment - and this is an absence that has pervasive implications for their lives. 'Finding a way to work' is looking at a 'self-build' form of supported work that may be open to young people in this group. It involves young people who have found a way to work that suits them and are following their inetersts with the support of a Personal Assistant. It will consider how far working in this way may deliver some of the 'goods of work other than money' (Gheaus and Herzog, 2016) - especially the learning that comes from participating, making a social contribution, experiencing community and gaining social recognition.

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Interested in taking part? Take a look at the information video Information for young people here Information for family, allies and friends here Posted in Tags: Uncategorized people with intellectual disabilities, people with learning disabilities, work and people with learning diabilities Roughly 93% of people with intellectual and developmental disabilities have no paid employment - and this is an absence that has pervasive implications for their lives.

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Our new year’s resolution — not to be part of the problem

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Our new year’s resolution — not to be part of the problem

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Stay Up Late, 15 January

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We're not going to advertise events that stop before 10pm - here's why

Recently we had our Gig Buddies partners day, it was incredible to share a day with people who are all committed to furthering our work and enabling more and more people with learning disabilities to lead active social lives and making lasting friendships based on what they love doing.

During the day Daniel and Darren spoke about the work they've been doing to establish a campaigns network and it led to an interesting discussion about learning disability club nights. As a charity we've been big supporters of these club nights over the years but the discussion went on to whether these could be creating a problem.

They also told us about this Tweet (this is a from a genuine Tweet which an event asked us to share! (We didn't share it)

"no need to 'Stay Up Late' as it's in the Daytime 2-4pm!"

Why does a good night out have to stop at 9pm?

What we love about inclusive nights is that they create a great place for people to meet their friends and socialise but we've noticed a worrying trend that more and more are finishing earlier. The extreme was last year hearing about a 'club night' in Scotland that finished at lunch time!

Why you should stay open even if there's hardly anyone there

We understand why this happens, when we were part of running the Kiss My Disco nights there would be a handful (at best) of hardcore party starters left on the dance floor at 10.30pm but our rule was always to create an opportunity for people to stay up late if they wanted to.

What we also hear is that support workers are turning up earlier to nights as well and asking to come in while they're still being set up. This shouldn't be the way it works - it doesn't work like that when you go out to a regular gig after all. You can't ask the band if you can watch their soundcheck, and while they're at it would they mind performing earlier so you can see their whole set and still be home by 10pm!

So what can we do?

We talked about using our Gig Buddies partners as a network of campaigners to do more about this and speak up in their localities but it got me thinking that we've not always been helping by sharing events that we don't actually think are sending out the right messages.

We appreciate that some nights have to end at 9.30pm (The Rock House in Brighton) because there's a club night straight after in the same venue, and that can't be helped.

But more and more seem to be starting at 6pm and ending at 9pm (some even earlier) and we think that by doing this we're allowing the bar to be set lower and lower for people with learning disabilities.

We heard of a regular 'night' (or late afternoon as we like to call it) in Wales which starts at 4.30pm and ends at 6.30pm. It sounds like a great night too, it's well attended and loads of students go too so it sounds as though they have everything in place to shift attitudes. If they could just shift the whole thing by 4 hours later in to the evening it would make all the difference. Just 4 hours.

Why are things so different for adults with learning disabilities?

This of course isn't a question which is just limited to clubbing, it cuts across many life experiences for people with learning disabilities but this is just one way in which we can try and change the way we think about things. Otherwise all we're saying is "that's the way it is for people with learning disabilities and that's that".

We don't believe this is right and that people with learning disabilities should have the opportunity to stay up late, dance, snog, and drink (in whatever order they choose).

It's easy to perhaps forget the impact that this has not only on the clubbers but also the organisers. DJ Chris Love explains this in his short video:

What we're going to do about it

As of the new year we're going to have some new rules about our events listings:

1. We will only advertise events that advertise that they end at least by 10pm (and we don't think that's late)

2. If there's a good reason (like the venue has a back to back booking) then we will advertise your event

3. In return anyone running a night that ends by at least 10pm can display the Stay Up Late logo on their event posters if they want to.

Developing the campaigning network

We'd also love to talk more with people organising club nights about how we can use these to develop the campaign to support more people to stay up late.

Ideas are:

Exit surveys

Mystery shopping

Demonstrations

Working with support providers to find solutions

Or do what we did at our recent night and all turn up wearing your pyjamas

And of course get some of our 'No Bedtimes' campaign materials.

That's our new year's resolution as a charity

Every night that we share and endorse on our events listings and social media will be ones that actively promote the right for people with learning disabilities to stay up late.

We appreciate that this might annoy some good people putting on club nights but unless we lead on saying something about this our worry is that events will get earlier and earlier and shorter and shorter.

So if you're running a club night with people with learning disabilities can you make sure that clubbers at least have the opportunity to stay up late? 10.30pm isn't that late after all but that extra hour can be all the difference in making it a great night out.

If you've got thoughts on this we'd love to hear your comments. Please post them below.

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Our new year's resolution - not to be part of the problem

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We're not going to advertise events that stop before 10pm - here's why Recently we had our Gig Buddies partners day, it was incredible to share a day with people who are all committed to furthering our work and enabling more and more people with learning disabilities to lead active social lives and making lasting friendships based on what they love doing.

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Learning disability service fair calls on Portsmouth businesses to be 'disability confident'

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Learning disability service fair calls on Portsmouth businesses to be 'disability confident'

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Portsmouth News, Richard Lemmer 25 January 2020

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Portsmouth City Council held the event in Gunwharf Quays, hosting 31 service providers catering for people with a variety of learning disability conditions on Friday January 24 as part of its Aspirations Week.

Maria Tucker, whose 28-year-old son has a severe learning disability, praised the support found throughout the city.

She said: 'We have been through hell and back to get support, but the system is much better now.

'There is a brilliant support network in Portsmouth between the council and providers and the NHS.

'There is stuff out there for people with learning disabilities - you just have to get out there to things like this.'

But Portsmouth businesses need to do more to be 'disability confident' to give people with learning disabilities more employment opportunities, according to Portsmouth City Councillor and Cabinet Member for Health, Wellbeing and Social Care, Matthew Winnington

He said: ' We want to make sure across the city we have more learning disability confident employers.

'Where there is the aspiration, we want business to be able to help.

'We are the only fully integrated service for people with learning disabilities in the county. That means we have a service made up of social workers and nurses from the NHS trusts and its all managed jointly and funded jointly.'

Often businesses have 'myths that need dispelling' about hiring people with a learning disability, according to Anita Godson, who trains people for employment at social enterprise Lily and Lime.

She said: 'A lot of businesses think you need enhanced insurance. We dispel those myths.'

The social enterprise offers job training through cafes in Portsmouth Central Library, Southsea Library, and Technople, and enjoys 'an 100 per cent success rate' by supporting 16 young people with a learning disability in finding employment, according Anita.

She said: 'Finding employment changes the young people's lives.

'We have worked with one young man who three years ago barely left his house. Now he is working at the Marriott hotel managing events.'

Among the services also represented at the event were Portsmouth City Council's Shared Lives project, which helps families open their homes to individuals with long term conditions who do not want to live in staffed supported accommodation.

Also present was Gig Buddies, a scheme that partners people with a learning disability and fellow-music fans to attend live music events together.

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Learning disability service fair calls on Portsmouth businesses to be 'disability confident'

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Portsmouth City Council held the event in Gunwharf Quays, hosting 31 service providers catering for people with a variety of learning disability conditions on Friday January 24 as part of its Aspirations Week. Maria Tucker, whose 28-year-old son has a severe learning disability, praised the support found throughout the city.

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CQC

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People regret not raising concerns about their care - but those who do raise concerns see improvements.

New research has found that almost 7 million people who have used health or social care services, in the last five years, have had concerns about their care but never raised them. Of these, over half (58%) expressed regret about not doing so.

The most common reasons for not raising a concern were:

not knowing how (20%) or who (33%) to raise it with

not wanting to be seen as a 'troublemaker' (33%)

worries about not being taken seriously (28%)

feeling that nothing would change as a result (37%).

However, when people did raise a concern or complaint, the majority (66%) found their issue was resolved quickly, it helped the service to improve and they were happy with the outcome.

Have your say

Your experiences of care supports our monitoring, inspecting and rating of services.

We want you to give us feedback on the care you have been given or have seen - not only poor care but good care too.

What to do about poor care
1. Contact the service provider
If you or a loved one experiences poor care, you should contact the service provider first. By law, all care services must have a complaints procedure.

If you are unhappy with the response, there are further steps you can take.
2. Tell us
This will help us understand how well a particular service cares for the people who use it.

We cannot support you with a complaint to the provider or take it up on your behalf. Your information will help us to protect others from having the same experience.

Find out about what we want to know and why.
Tell us about your care now
Find services

You will need to identify the service that you want to comment on.

Our map of service ratings across England shows the services we've inspected and links to their reports. Or you can search for a particular health or care service.

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People regret not raising concerns about their care - but those who do raise concerns see improvements. New research has found that almost 7 million people who have used health or social care services, in the last five years, have had concerns about their care but never raised them.

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Whorlton Hall abuse: Care watchdog wrong not to publish critical 2015 report

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Whorlton Hall abuse: Care watchdog wrong not to publish critical 2015 report

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BBC News 22 January 2020

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The care watchdog was wrong not to publish an inspection report raising concerns about Whorlton Hall, four years before a Panorama investigation suggested alleged abuse, a review says.

Former Care Quality Commission inspector Barry Stanley-Wilkinson said not publishing his 2015 report was a "missed opportunity" to prevent abuse.

Last year's undercover filming appeared to show patients with learning difficulties being mistreated.

Ten workers were later arrested.

The County Durham hospital, which has now been closed, treated patients with severe learning difficulties and autism.

The CQC commissioned David Noble QSO to carry out an independent review into how it dealt with the concerns raised by Mr Stanley-Wilkinson's draft inspection report and how they were addressed by senior personnel.

More on this story:

The unpublished 2015 report found the hospital, near Barnard Castle, "required improvement", raising a number of concerns, including inadequate staffing levels, a lack of training and a failure to follow patients' care plans.

But a subsequent report the following year gave the privately-run, NHS-funded unit an overall rating of "good".

The Noble review makes seven recommendations relating to the security and availability of notes from CQC inspections, information provided to inspectors about services, and the internal whistleblowing processes of the CQC.

It said one of the main reasons Mr Stanley-Wilkinson's report was not published was that it was considered to be "not of publishable quality" and lacked evidence to back up some of the findings.

But Mr Stanley-Wilkinson, who later resigned from the CQC, said the failure to publish his 2015 report "was a missed opportunity to potentially prevent the abusive practices that we saw in the Panorama documentary".

He said: "I'm still struggling to understand why that inspection report was never published.

"The CQC has said there wasn't sufficient evidence within the report. I was never asked to make any further amendments, I was never asked to supplement the report with further evidence.

"For them to say there was insufficient evidence within the report, that wasn't the responsibility of just my managers to make that decision, it was the responsibility of a quality panel to make that decision.

"But it never went to a quality panel."

The undercover Panorama filming at Whorlton Hall shook the sector. It came eight years after an expose at a similar facility, Winterbourne View.

That scandal prompted ministers, inspectors and senior people in the learning disability sector to promise it would not happen again.

People would be moved out of these type of units and tougher regulation would ensure these vulnerable patients were treated with dignity and respect.

So the fact that warnings over the care being provided at Whorlton Hall went unheeded seems unforgiveable and prompt even more questions about how these institutions are regulated.

After the BBC programme was aired, the Care Quality Commission claimed it was incredibly difficult to spot the signs of problems in the closed cultures that characterise these sort of institutions.

But it is now clear the evidence the CQC needed to prompt them to take a closer look was under their noses all along.

If the concerns of Barry Stanley-Wilkinson had been acted on, his bosses at the Care Quality Commission would surely have been compelled to keep a closer eye on what was going on at Whorlton Hall long before the BBC did.

Sir Stephen Bubb, who wrote a report into the Winterbourne View scanda l, said: "In 2014 I recommended that the government close these institutions. They are by their nature abusive and I said we needed to develop community facilities.

"The government accepted that report but have done very little about it.

"You don't need more reviews. You need action to close them."

Whorlton Hall had at least 100 visits by official agencies in the year before the abuse was discovered.

A separate review of the CQC's regulation of the hospital between 2015 and 2019 has yet to be published.

Danshell Group ran the 17-bed hospital unit in 2015 and was taken over by Cygnet in 2018. Cygnet said it was "shocked and deeply saddened" by the abuse allegations.

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Watchdog 'missed opportunity to stop abuse'

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The care watchdog was wrong not to publish an inspection report raising concerns about Whorlton Hall, four years before a Panorama investigation suggested alleged abuse, a review says. Former Care Quality Commission inspector Barry Stanley-Wilkinson said not publishing his 2015 report was a "missed opportunity" to prevent abuse.

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Teenage Leeds actor stars in new British LGBTQ film

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Teenage Leeds actor stars in new British LGBTQ film

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Yorkshire Evening Post, Mark Lavery, 23 January 2020

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Mencap ambassador George Webster, 19, of Rawdon, plays one of two teenage boys called Sam who fall in love with each other at their local park in the film called S.A.M.

The second Sam is played by Ackley Bridge star Sam Retford.

The film deals with themes including how society treats people living with disabilities and stereotypes regarding sexuality and disability.

George Webster pictured (right) with Sam Retford (left) and David Tag (centre).

It also deals with some of the issues faced by young people from disadvantaged and broken families.

George Webster, said: "The film is important to me because it's about being yourself, accepting yourself and accepting others for who they are.

"The film also shows that people with disabilities have the ability to be strong actors.

"Another thing that's important for visibility is that we can have equal opportunities and equal rights too."

George's dad Rob Webster, said: "People with a learning disability like to be seen as people first. He is George, he is not his learning disability.

"He is a real positive force of nature. He tends to think he can do anything and it ends up working out for him."

"the film is all about difference and how people should be seen for the people they are.

"The script is really funny and the way it's done is really nice and touching."

David Tag said: ""Being given the opportunity to work on this exciting project with Sam Retford and George Webster, who are both extremely talented actors, has been incredibly liberating. I feel lucky to be part of such a progressive and inclusive film."

S.A.M. will be entered into film festivals around the world, including high profile festivals like Cannes, and the BFI London Film Festival.

Rob Webster, said: "George has a passion for acting, dance and musical theatre. He has performed on TV, film and in the theatre.

"He has been part of MeshDance inclusive dance troupe for a decade.

"Their film TellTale premiered at the Leeds Young People Film Festival and has been shown at multiple venues, including the English National Opera.

" He is about to tour England with his other troupe, TalentHub performing their show Helm, supported by TinArts and the Arts Council.

"He is a parkrun ambassador, which led to him being the subject of the short film Jessica's parkrun heroes for Sky in 2019. He has also done extra work for Emmerdale.

"He has acted at the Leeds City Varieties, Yeadon Town Hall and danced at many venues across Yorkshire, including the Northern School of Contemporary Dance, Northern Ballet, Cast and West Yorkshire Playhouse."

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Teenage Leeds actor stars in new British LGBTQ film

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Mencap ambassador George Webster, 19, of Rawdon, plays one of two teenage boys called Sam who fall in love with each other at their local park in the film called S.A.M. The second Sam is played by Ackley Bridge star Sam Retford.

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A new coming of age film S.A.M explores love and acceptance

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A new coming of age film S.A.M explores love and acceptance

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ITV News 22 January 2020

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It is a short coming of age film with a powerful message.

It's called S.A.M. and explores acceptance and how people living with a learning disability can feel about love and sexuality.

19 year old George Webster, an actor with Down's Syndrome plays one of the main characters. He falls in love with Sam played by Sam Retford who's 20 and from Crewe and is known to fans of the drama Ackley Bridge.

Sam's brother has Cerebral Palsy and he said the film is fun with an important message but not in a 'preaching' way.

Its creators are Writing/Directing duo Eyre and Ely from Manchester. They wanted to ensure people with disabilities were also behind the camera and part of the production and were involved in filming some of the scenes.

It was filmed in just one weekend and now will be entered for Film Festivals around the world, with the hope of turning into a feature length film with the same cast.

Film Producer Nell Green said often people are 'scared' about using the wrong words when talking about disabilities and that can be a barrier. This film hopes to help start those conversations and tackle what's often been a taboo subject until now.

George Webster who's 19 has been involved in drama and acting for years. This is his first film. He's also an Ambassador for Mencap

You can follow the film's progress here:

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a new coming of age film s.a.m explores love and acceptance

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A new coming of age film S.A.M explores love and acceptance

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It is a short coming of age film with a powerful message. It's called S.A.M. and explores acceptance and how people living with a learning disability can feel about love and sexuality. 19 year old George Webster, an actor with Down's Syndrome plays one of the main characters.

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Health Whorlton Hall: Care regulator ‘was wrong’ to bury whistleblower’s report into failings at hospital where patients were abused

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Health Whorlton Hall: Care regulator ‘was wrong’ to bury whistleblower’s report into failings at hospital where patients were abused

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Independnt, Shaun Lintern, 23 January 2020

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The care watchdog missed multiple opportunities to identify abuse of patients at a privately run hospital and did not act on the concerns of its own members, an independent review has found.

Bosses at the Care Quality Commission (CQC) have been criticised in an independent report by David Noble into why the regulator buried a critical report into Whorlton Hall hospital, in County Durham, in 2015.

His report published today said the CQC was wrong not to make public concerns from one of its inspection teams in 2015.

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"The decision not to publish was wrong," his report said, adding: "This was a missed opportunity to record a poorly performing independent mental health institution which CQC as the regulator, with the information available to it, should have identified at that time."

Despite interviewing staff and reviewing evidence Mr Noble said: "Despite requests for justifications and documentation I have not had explained to me, in any satisfactory and documented way, a detailed and persuasive justification for that decision not to publish. Nor have I received any clear and detailed analysis of the faults in that draft inspection report which were considered so fundamental that they justified the decision not to publish it."

The Independent previously revealed that police were investigating allegations of abuse against 16 patients with learning disabilities at Whorlton Hall in May 2019. Later that month the BBC's Panorama programme recorded repeated incidents of abuse of patients by staff using hidden cameras. Ten staff were later arrested.

CQC whistleblower Barry Stanley-Wilkinson, a former inspector at the watchdog, then revealed he had written a draft inspection report raising serious concerns about the care of patients at the hospital in 2015 but that the regulator had refused to publish it.

He left the CQC in 2016 after the report was buried despite an internal report saying the decision was wrong and recommending it should be made public.

David Noble was asked by the CQC to look into how Mr Stanley-Wilkinson's concerns were handled by the watchdog. His report today also revealed members of the inspection team had also reported "serious safeguarding issues and risks to service users" directly to CQC in 2018 before the hospital was rated good.

He said that while the 2015 report written by Mr Stanley-Wilkinson did not actually find evidence of abuse of patients it did find numerous areas of "serious concern and failings by the provider properly to manage the care and safety of individuals in Whorlton Hall".

The care of learning disabled and autistic patients who are detained in hospitals has come under increasing scrutiny, with the UK Parliamentary Committee on Human Rights saying some children were enduring "terrible suffering".

Mr Noble said he was concerned that the responses to the issues at Whorlton Hall mirrored those made in 2012 after poor care and abuse of patients by staff was exposed at the Winterbourne View home, near Bristol.

He said: "These responses could just as well be made now, in 2020, to the material and evidence uncovered in respect of the placement, care and treatment of patients at Whorlton Hall as they were in 2012 at Winterbourne View. It must be deeply concerning to all of us that this is the case."

Ian Trenholm, chief executive of CQC, said the regulator accepted the report and findings in full adding: "David Noble's review concludes that the decision not to publish the report of the 2015 inspection was the wrong one, which we fully accept.

"The review also concludes that although the 2015 inspection did identify concerns about the operation of the hospital at Whorlton Hall, at that time, there was no evidence that patients were being abused."

The regulator is also facing an upcoming review from Professor Glynis Murphy who is examining how the CQC can better regulate mental health, learning disability and autism services.

Mr Trenholm said: "We want to get better at spotting poor care and at using the information people share with us, and will involve people, families, carers and stakeholder organisations to ensure we get it right."

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Care regulator 'was wrong' to bury whistleblower's report into failings at hospital where patients were abused

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The care watchdog missed multiple opportunities to identify abuse of patients at a privately run hospital and did not act on the concerns of its own members, an independent review has found.

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‘Remember disabled people in social care debate’, Mencap urges

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‘Remember disabled people in social care debate’, Mencap urges

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Home Care Insight, Sarah Clarke 20 January 2020

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Mencap, a UK charity for people with a learning disability, has urged the government to make sure disabled people are not forgotten from the social care debate.
The organisation made the plea after the Conservatives promised to find a cross-party consensus that addresses social care challenges in the long-term.

Half of social care spending in England is allocated to disabled adults aged 18-64 - a third of whom have a learning disability, according to Mencap, but it has been suggested by leaders in the sector that disabled people are often overlooked by politicians in their pledges to fix the social care system.

Examining Boris Johnson's opening remarks as prime minister in July, Age UK director Caroline Abrahams said social care has been defined purely in terms of the needs of older people.

And according to the 2019 ADASS Budget Survey, local authorities are facing a £180 million hole in their social care budget to meet the current levels of support being provided for people with a learning disability.

Dan Scorer, head of Policy and Public Affairs at the learning disability charity Mencap, said: "Disabled people who have already been left behind by years of austerity are being forgotten from this debate. Support for disabled adults makes up half of the social care budget, of which a third is for people with a learning disability.

"People with a learning disability are less likely to own their own home or have life savings that can be used to fund their care. A lack of local social care support means people with a learning disability are experiencing loneliness, poverty and homelessness. While we welcome the announcement that the government will seek cross-party consensus on proposals for long-term reform of social care, what we need now is a clear plan from Government and the money the system needs to fix the social care crisis for good, including for disabled people."

There are 1.5 million people in the UK who have a learning disability, a lifelong reduced intellectual ability which means that people need support with everyday tasks like cooking, travelling, attending appointments and managing money etc.

For people with severe or profound and multiple learning disabilities they need round the clock care including help with personal care.

In the year 2017/18, 150,000 people with a learning disability in England received support from their local authority.
Caption: Mencap's domiciliary care service in Gainsborough was rated Outstanding by the CQC in July.

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'Remember disabled people in social care debate', Mencap urges

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Mencap, a UK charity for people with a learning disability, has urged the government to make sure disabled people are not forgotten from the social care debate. The organisation made the plea after the Conservatives promised to find a cross-party consensus that addresses social care challenges in the long-term.

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New Sussex cafe that employs people with disabilities gets glowing reviews on social media

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New Sussex cafe that employs people with disabilities gets glowing reviews on social media

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Eastbourne Herald, Andy Hemsley 20 January 2020

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A new social enterprise cafe in Bexhill is helping to make a difference by employing people with learning disability.

Strive Café opened in Sackville Road in early December and is proving to be really popular.

There has been significant interest and support for the mission of Strive Café from specialists in disability and the general public, as well as excellent social media reviews (100 per cent five star to date) on the café's staff, ambience and food.

The mission of Strive Café is to enhance the lives of individuals with disability through purposeful paid employment in a quality and good-value café for customers.

Director Mary Briggs said: "We believe that adults with learning difficulty and disability deserve the opportunity to achieve their maximum potential and lead fulfilling lives. Our café wants to accelerate the availability of paid employment for individuals with additional needs. The 'work empowering ability' vision benefits from current national interest and commitment to increase disability employment opportunities."

One of the recommendations said: "Brilliant cafe. Lovely people and awesome cake." while another reviewer said: "Lovely, friendly cafe, giving people with learning disabilities a chance of employment." Another said: "The staff are fantastic - such a great ethos behind it."

Mary Briggs added: Our vision is supported by government policy: statistics show that currently less than 6% of adults with learning disability are in employment. In May 2019 a government target was set to increase disability employment 16% by 2027. Those who are employed often find it an

isolating experience with limited understanding of their special needs from employers.

"Cafés providing work experience and voluntary roles for individuals with special needs have proved successful in many organisations. Strive

Café builds on the success of these enterprises, but where it differs and is unique is by providing permanent contracts and paid work.

"Offering a fulfilling work environment promotes emotional well-being and increased independence. Support by experts enable the assistants to break down barriers and achieve their potential.

"All assistants are treated as professionals and unique individuals with their own programme of development and career pathway. For most assistants, working in the café is their first opportunity to be paid employees.

Strive Café is based at 8 sackville Road, Bexhill, and is open Monday - Friday 8.30am - 3.30pm and Saturday 10am - 5pm.

See also: Are these the scariest pub toilets in Sussex?

See also: Meet Woody the miracle kitten who has been named as Pet Survivor of the Year

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New Sussex cafe that employs people with disabilities gets glowing reviews on social media

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A new social enterprise cafe in Bexhill is helping to make a difference by employing people with learning disability. Strive Café opened in Sackville Road in early December and is proving to be really popular.

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Pubs and Gigs and Cake 2020 NEW YEAR'S RETROSPECTIVE

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Pubs and Gigs and Cake 2020 NEW YEAR'S RETROSPECTIVE

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Christian 7 January 2020

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A year has zipped by since my last NEW YEAR'S PHOTOGRAPHIC LOOKBACK. Like last year... some highs and some lows and plenty of "PUBS, GIGS AND CAKES" oh and a party.
​

Towards the end of the year I got involved with talking with Dimensions about people with lots of needs (labelled PMLD) and them being seen as leaders. Then some other talks with NHS England about how hospitals are still difficult places to be for people with learning disabilities and complex needs.

But mostly my chats take place in the PUB where I've built a bigger group of friends who sit and talk and ask questions. That is where I was to be found on New Year's Eve. So, INCLUSION continues to be my favourite idea for 2020 and am happy to see this as the theme for LD England's Annual Conference.

It was truly difficult choosing photos to sum up my year...
No New Year's Resolutions just...

And so it begins... are we all in it together?

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A year has zipped by since my last NEW YEAR'S PHOTOGRAPHIC LOOKBACK. Like last year... some highs and some lows and plenty of "PUBS, GIGS AND CAKES" oh and a party.​ Towards the end of the year I got involved with talking with Dimensions about people with lots of needs (labelled PMLD) and them being seen as leaders.

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Caroline Stevens: ‘My son’s experience of autism made me want to fight for change’

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Caroline Stevens: ‘My son’s experience of autism made me want to fight for change’

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Th Guardian, Helene Mullholland, 8 January

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Caroline Stevens first had contact with the National Autistic Society in 1997 after calling its helpline. The information she acquired helped her to get a diagnosis for her son Jack, then just over two years old. Stevens joined a local NAS branch, run by volunteers. There, she learned about autism and found practical help and support from other parents following the diagnosis - a time when, she says, "you feel quite isolated and alone". Jack was diagnosed with autism, a learning disability, a sensory processing disorder and a sleep disorder. He cannot speak. She adds: "It was very difficult for him growing up, and we experienced a lot of the challenges that many families go through."
The scandalous detention of learning disabled people won't be stopped by a review | Dan Scorer
Now Jack is 25 and Stevens is now the NAS chief executive. She arrived in post in November, just after the general election campaign had kicked off. The three main parties' manifestos all included specific mentions of autism. The Conservatives pledged to "make it easier for people with learning disabilities and autism to be discharged from hospital and improve how they are treated in law", and promised £74m over three years for additional capacity in community care settings.

Stevens says these are both a priority, given the countless media stories highlighting "the scandal of autistic people stuck inappropriately in mental health hospitals ". The NAS will track where the new money is spent and push for increased funding across the entire social care system, she says. Reviewing mental health law, which makes it "too easy" to deprive autistic people of their liberty, is also crucial. Other Tory pledges include a new cross-government strategy for disabled people, and special educational needs funding. "Our charity will be making sure that these are all taken forward in a way that can help transform autistic people's lives," says Stevens.

Commitments made by the last Tory government include an autism awareness campaign, and a new autism strategy for England that will include children for the first time. The NAS expects publication of the strategy in the coming months.

"We want to see a new all-age autism strategy that not only sets ambitious goals for improving support, but sets out an achievable - and funded - plan for reaching them. This is vital to create a society that works for autistic people."

Stevens' role is the result of her decision to make supporting autistic people part of her professional as well as her personal life. Her son's "very high levels of support needs" meant that she "had to fight for pretty much all the support all the way through". She switched from hospital management to the voluntary sector, and later became chief executive of a pan-disability charity for children and young people. She realised just how many other people were struggling. "What saddened and disappointed me was that, up and down the country, there are thousands and thousands of families struggling with the lack of services and support. It shouldn't be like this. What my family had been through gave me the fight and passion to try to change things."

Up and down the country, there are thousands of families struggling with the lack of services and support

With almost 3,000 staff and 2,000 volunteers across the UK, the NAS delivers a variety of services, including schools and residential supported living, to autistic people with complex support needs. The other part of its mission is to influence policy and change attitudes towards autism. Awareness of autism has "increased massively" over the years, but, Stevens says, the NAS defines autism as "a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them". She cites a recent NAS campaign to increase understanding of what it's like to be autistic, Too Much Information, but admits that there is "still a long way to go ... there is a big job to be done about ensuring that professionals, as well as the general public, have a greater understanding of autism."

The challenge was laid bare in a recent joint inquiry with the all-party parliamentary group on autism (APPGA), The Autism Act: 10 Years On, which looked at the impact of the landmark legislation for autistic adults in England. The overwhelming picture that emerged was "one of deeply concerning unmet need", with the support available going backwards. Stevens explains: ""If there is greater understanding around the needs and challenges of autistic people, then professionals will know and understand what services need to be in place as well."

Only 21% of councils in England are fully complying with the legal duty to provide autism training to all health and care staff. Just prior to the general election, the government announced £1.4m to trial mandatory training for every NHS and social care worker prior to a wider rollout. "That's not enough, but it's a start," says Stevens. Rolling it out nationally would require more resources, she says, and there would need to be clarity on who would foot the costs.

It's not just training that is crucial, but ensuring that services are tailored to meet autistic people's needs. What autistic people desperately need are more community-based services, such as day services to avoid social isolation, she explains. "Being stuck at home with nothing to do and no one to see will impact on a person's wellbeing, and may lead to a 'crisis point'," she says. "You need to intervene early."

Research shows that almost eight in 10 autistic adults will experience mental health problems during their lifetime. The lack of community-based mental health services see many end up in crisis, and a growing number are admitted to mental health hospitals, as it is the only form of care they can access. Often they get stuck there because of that very lack of community-based support. It is, says Stevens, a "vicious cycle".

Moreover, the definition of autism as a mental disorder within the Mental Health Act means that autistic people can be inappropriately detained in hospitals against their and their family's will, sometimes for years. A report by the parliamentary joint committee on human rights, published last month, called for the legislation to be overhauled. The government then promised that all 2,250 inpatients with learning disabilities and autism in mental health hospitals will have their care reviewed within 12 months. Stevens says this should be happening anyway.

The NHS long-term plan has a commitment to improve community mental health support and halve the number of autistic people and people with learning disabilities in inpatient settings by 2023-24. Achievable? "If there is a true commitment, then yes, but that needs to be funded and there needs to be action," says Stevens.
Autistic people are not all superheroes, but we're not all tragic, either | Ellen Jones
Now the election is over, Stevens is clear there is an opportunity to hold all parties to account on making sure autism is a priority. Stevens' mission is clear: "To create a society that works for autistic people."

Curriculum vitae

Age: 50.

Family: Married, three sons including Jack, who is autistic.

Lives: Market Harborough, Leicestershire.

Education: BSc pharmacy, De Montfort University, Leicester; MBA, Open University.

Career: Nov 2019 to present: chief executive, the National Autistic Society; 2013-19: chief executive, KIDS; 2009-13: chief operating officer, British Lung Foundation; previously: hospital managing director, operating theatre manager, hospital pharmacy manager and community and hospital pharmacist; 2007-09: managing director, Aston University day hospital; 2005-07: operating theatre manager, Bupa hospital, Leicester; 2003-05: pharmacy manager, Bupa hospital, Leicester; 2002-03: clinical ward pharmacist, Bupa hospital, Leicester; 1991-2002: consultant pharmacist and store manager, Boots UK plc (multiple sites across Leicestershire).

Public life: Trustee at Dementia Carers Count; trustee at Homefield College, a small independent specialist college in Loughborough for young people with learning disabilities and autism; vice-chair of the partnership board, Council for Disabled Children.

Interests: Walking Nell (border collie) on the North Yorkshire beaches and moors, and spending time with family and friends.
Topics

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Caroline Stevens: 'My son's experience of autism made me want to fight for change'

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Caroline Stevens first had contact with the National Autistic Society in 1997 after calling its helpline. The information she acquired helped her to get a diagnosis for her son Jack, then just over two years old. Stevens joined a local NAS branch, run by volunteers.

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Head of learning disability nursing calls for ‘reset’ of profession

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Head of learning disability nursing calls for ‘reset’ of profession

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Nursing Times, Megan Ford, 7 January 2020

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Traditional thinking on vulnerability needs to change

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Traditional thinking on vulnerability needs to change

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Money Marketing, Martin Lines, January 2020

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Teen with Down’s syndrome joins hip-hop dance company 

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Teen with Down’s syndrome joins hip-hop dance company 

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Metro, Faima Bakar, 7 Jan 2020

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To view this video please enable JavaScript, and consider upgrading to a web browser that supports HTML5 video

Teenager Francesca Goff, from Cornwall, was born with Down's syndrome - but it hasn't stopped her becoming a dancer.

Her parents, Annemarie and Frank, initially worried about Francesca and the quality of life she would lead.

But after discovering dancing, fearless Francesca would strut her stuff at every opportunity - and she now dances at shows throughout the UK, and has even been to the UN in Geneva to speak about her experiences.

The 18-year-old now dances with three groups in Cornwall - PicNMix, a group by the Cornwall Down's Syndrome Support Group; Collective Dance Group and TR14ers - a hip hop community dance charity.

Francesca explained: 'I like to make my family proud and myself proud and I want to work hard as best as I can.

'I like being with my friends having fun and learning to communicate well and learn new dances.'

In her earlier years, Francesca's waking and speech were delayed, which is common in people with Down's syndrome.

But now her life has completely transformed, and the family travel from their home in Camborne so Francesca can dance at Public Health conferences.

Mum Annemarie added: 'She has always enjoyed dancing.

'Her real love of dancing started in primary school and since then she has performed for local festivals all around Cornwall to raise the profile of Down's syndrome and show people what they are actually capable of.'

The Goffs have always tried to spread awareness of Down's Syndrome - but said there is a lot more to be done.

Francesca's dad Frank said: 'People always ask the question "is life tough having a child with Down's syndrome?" and my answer is always the same and that is that it is like having any other child.

'But the more people get out there about Down's syndrome the less afraid of it people are.'

Sister Cecily, who went to the same school as Francesca, is also proud of her as she was often left out with her peers during her studies.

She said: 'Down's syndrome has always been a part of my life so I never thought it was a thing.

'But when I went to secondary schools you get the segregation of kids with special needs but they are fine when they speak to you in the playground.

'It is important that that is exposed and shown as normal and it's something that needs to be focused on more.'

Helen Laverty, the professional lead for Learning Disability Nursing at the University of Nottingham, met Francesca in Geneva.

'She is never afraid to speak up or out,' she said.

'She is the most effective role model for young children and parents with Down's syndrome who are just entering the scary world of mainstream education.

'Francesca inspires people to dream big.'

MORE: Little boy with Down's Syndrome and a breathing condition models for Primark

MORE: Texas woman creates hyper realistic Down Syndrome baby dolls

MORE: Student with Down syndrome makes history by graduating from college

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Teen with Down's syndrome joins hip-hop dance company

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Francesca Goff, a teenager from Cornwall, was born with Down syndrome which affects around 775 babies each year in the UK.

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Hospitality and Catering News, 4 January 2020

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MARRIOTT LEARNING DISABILITY EMPLOYMENT RECORD DELIVERS SUCCESS RATE 11 X NATIONAL AVERAGE Ron Vos, General Manager London Heathrow Marriott & Heathrow Windsor Marriott Hotel, outlines the impact that implementing DFN Project SEARCH's innovative training programme has had on the culture and operations within the hotel.
He explains the effect the learning disability employment and education scheme could have on the hospitality industry if it was rolled out by more hotel groups as well further Marriott sites. Focusing specifically on Marriott, Ron details the roles that DFN Project SEARCH students and graduates carry out and the value they have added to the entire workplace.

The hospitality and hotel sector are all about lending a helping hand - but helping doesn't need to be preserved for your customers.

At Marriott, we go out our way to cater for the needs and requirements of everyone that passes through our doors, going above and beyond on a daily basis to ensure every visit to our hotels exceed the expectations that our customers have come to expect.

Our standards are high, and we pride ourselves on them. As a result, our much-loved staff are front and centre of everything that we do. They are the cog that makes Marriott the worldwide brand that is known and loved throughout the globe.

Our employees come from a wealth of different backgrounds and it is that diversity that make us the workforce that we are.

Our sense of diversity has been aided in massive part to our ground-breaking partnership with learning disability employment charity, DFN Project SEARCH, at our London Heathrow Marriott site.

DFN Project SEARCH is an international training programme that boasts a proven track record of supporting young people with learning disabilities and helping them into paid employment - and one that I personally have been involved in and helped implement.

For four years, we have teamed-up with the charity to bring employment opportunities to those that otherwise may not have been provided with the opportunity.

Our programme enjoys a success rate of getting 66 per cent of people who undertake it into real- world jobs, which is a substantial increase on the national average of a mere six per cent. These figures are despite around 75 per cent wanting to work.

I have watched first-hand as DFN Project SEARCH provides real-life work experience, combined with training in employability and independent-living skills, to help young people with learning disabilities and autism to enjoy a productive adult life and attain high-quality employment.

The evidence-based programme is engineered for each participant to secure a job, gaining experience in a real working environment.

I would be doing it a disservice to simply say this partnership has been a success.

DFN Project SEARCH shows that with the right guidance and professional support from supported employment providers and colleges, people with learning disabilities have the potential to be a force for change. Through working with DFN Project Search, London Heathrow Marriott has been instrumental in providing enhanced employment opportunities for people with autism and learning difficulties.

The programme has been a huge boost and benefit for the entire organisation.

Year after year DFN Project SEARCH provides us with glowing examples that serve a reminder as to why we continue to drive this partnership forward. Each cohort that we welcome to the Marriott family are a delight to follow as we track their progress from their first day on the job learning new skills as Associates, to then blossoming from the shy personalities to confident young adults.

We have been blown away by the results. London Marriott Heathrow currently has three particularly inspiring young adults forging ahead with careers that they previously couldn't have dreamed of before seizing DFN Project SEARCH with both hands.

Brian, Shay and Michael are remarkable young men who have grabbed this opportunity and have shown to us exactly why Marriott should play a major role in the programme, bringing it to the forefront of the minds of other businesses, groups and sectors. Brian works in our engineering department as a shift engineer, playing a vital role in the running of the hotel infrastructure on a day-to-day basis. On his own accord, Brian continues to push his own boundaries in a fashion that even his family didn't believe was possible. A new-found confidence has seen him value his own personal development and he is currently expanding his remit into the hotel's computer system.

Meanwhile, Shay has become a valued member of our housekeeping team - and when the programme finished up for half-term, he was a notable absence around the hotel.

Michael, who is a stalwart of our banqueting team, continues to make us so proud. Banqueting accounts for a huge part of our business and working in the department comes with a lot of responsibility which he has thrived in from day one.

What can't be understated is the care and focus provided by all at DFN Project SEARCH. I'm naturally a very impatient person and when the idea was tabled about implementing the programme, I can openly admit I had my doubts.

I was concerned about the time and effort it would take from our staff, and how long it could take to implement DFN Project SEARCH to the level that we wanted it to be.

But my fears were immediately allayed following one meeting with the DFN Project SEARCH team. They detailed every single aspect of what the programme entails, while showing the support structure in place that put my mind at rest.

Everything they outlined has become a reality, and if anything, the programme continues to grow stronger and stronger with each passing year.

It is for that reason I have had no issue championing the scheme to other Marriott hotels.

The hospitality sector is fast growing and Marriott service over 1 million bedrooms, creating the perfect job opportunities for those with learning disabilities and a willingness to learn.

DFN Project SEARCH provides students that pathway - and the mutual benefits are limitless.

The lift in morale among staff is perhaps the most striking, as the students' willingness to learn is uplifting, as is their undying enthusiasm for the tasks that they tackle.

Working in hospitality can be testing at times, but each and every day the students approach the job with the same levels of excitement and encouragement, which rubs off on us all.

And by working together we have realised the limitless potential in our collective partnership.
H&C News hopes you saw the opportunity for your business by reading this article, we would like to thank Ron Vos and the team at Marriott for enlightening us. We found the video below equally enlightening, and again encourage all readers to watch in full, the end justifies a few minutes of your valuable time.

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If your hospitality business suffers from people and skills shortages, not reading this case study in full is irresponsible of you - Hospitality & Catering News

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MARRIOTT LEARNING DISABILITY EMPLOYMENT RECORD DELIVERS SUCCESS RATE 11 X NATIONAL AVERAGE Ron Vos, General Manager London Heathrow Marriott & Heathrow Windsor Marriott Hotel, outlines the impact that implementing DFN Project SEARCH's innovative training programme has had on the culture and operations within the hotel.

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100 years of caring: The nurses making a difference to people with learning disabilities

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100 years of caring: The nurses making a difference to people with learning disabilities

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Daily Echo 5 January 2020

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NURSES who support people with learning disabilities gathered to celebrate 100 years of their specialist profession.

Past and present nurses gathered at Bulbury Woods Golf Club near Poole and enjoyed a commemorative cake as they discussed the development of the service over the years.

The Learning Disability (LD) Nurses Team at Dorset HealthCare offers practical help with physical and mental health problems, relationships, behaviours and communication.

Staff work closely with families, carers and GPs to ensure the care and support provided is tailored to the needs of the individual, helping people live safely and healthily in the community.

Susannah Bailey, 44, from Bournemouth, has a disability and was supported by the team for six years. She had previously felt depressed and had little motivation but things changed when Ginny Boniface, her LD Nurse, worked with her to create a wellbeing plan.

Whenever Susannah was feeling down, the plan gave her visuals and prompts of things to make her feel better, such as call a friend, have a cup of tea or play a game.

Her mental wellbeing improved and she became more independent, developing new interests and a love of cooking, in particular.

Susannah said: "Ginny was a very kind nurse, provided great advice and helped me to get better. I am more independent now and feel happier. She made a real difference to my life."

Susannah continues to receive regular physiotherapy from the Trust, and she helps interview potential new LD nurses, providing valuable input from a patient's point of view.

To find out more regarding Dorset HealthCare's learning disability services across the county, go to learningdisabilitiesdorset.uk

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100 years of caring: The nurses making a difference to people with learning disabilities

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NURSES who support people with learning disabilities gathered to celebrate 100 years of their specialist profession. Past and present nurses gathered at Bulbury Woods Golf Club near Poole and enjoyed a commemorative cake as they discussed the development of the service over the years.

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How do we include people with Learning Disabilities and/or autism? 

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How do we include people with Learning Disabilities and/or autism? 

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Grace Eyre, Cleo Dibb,  January 2020

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The Big Issue
Ever since the beginning of deinstitutionalisation in the 1960s, organisations like Grace Eyre have been aspiring to support the wider societal inclusion of people with Learning Disabilities and/or autism. Whilst there has been a push since the self-advocacy movements of the 1990s to not just support inclusion but to give a platform to marginalised voices, it still feels like we are a way off of achieving equality.
Who deserves to be equal?
The consistent societal focus on people with Learning Disabilities and/or autism to gain independence above all else illustrates that we still think that for people to fit the criteria for deserving equality, they should be able to cook, clean and ultimately have a job. It's often thought that until they do, service providers and other stakeholders will have the power to decide on what is and isn't best for them. At Grace Eyre, we realise that in reality people with Learning Disabilities and/or autism may always need support to do these things and this is okay - that's what we're here for! We understand that the real measure of equality is people's rights, choice and control over their lives.
Co-production
To achieve people's rights, choice and control over their lives, people who use our services should also have a say in the running of these services. This is where co-production comes in. Co-production is the equal participation of people with Learning Disabilities and/or autism, parents, carers and professionals in designing, delivering and monitoring these services. This dissolves the power dichotomy that often exists between service provider and service user. It creates a level playing field in which everyone gets to equally participate. It respects that the people who know best about how to be supported are the people receiving that support.

Image: Coalition for Collaborative Care
What can you do?

If you are someone with a Learning Disability and/or autism who wants to be more involved in the Grace Eyre Foundation, get in touch - we would love to work with you!

If you are a someone who supports a person with a Learning Disability and/or autism and would like to know more about Co-production, request training via your manager or by emailing training@grace-eyre.org

Remember, actively listening to peoples wants and needs and working together to achieve them is the most important part of co-production.

If you've enjoyed this post then please do share it - thank you!

Cleo Dibb, Our Voices Manager

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Blog: How do we include people with Learning Disabilities and/or autism? - Grace Eyre Foundation

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The Big Issue Ever since the beginning of deinstitutionalisation in the 1960s, organisations like Grace Eyre have been aspiring to support the wider societal inclusion of people with Learning Disabilities and/or autism.

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Mandatory training for health and social care staff

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Mandatory training for health and social care staff

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Letter to MP  19 December 2019

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Mandatory training for health and social care staff

Today more than 55 organisations have come together to write to the Health and Social Care Minister, Matt Hancock. They are asking that the training in working with people with learning disabilities and autistic people is not a wasted opportunity.

They go onto say "How this training is developed and tested could help change attitudes and support the shifts we all want for people with learning disabilities to live long healthy lives as equal citizens"
You can read the full letter here
The organisations involved in the letter include local user led, community development, social care and education support organisations.

We at Learning Disability England hope the roll out of mandatory training mirrors this collaborative approach - bringing people and organisations together.

Scott Watkin, BEM, Organisational representative on Learning Disability England's Representative Body said,
"We need everyone's skills and experience to make this work well. It's time to share power and help save lives by changing attitudes and increasing staff confidence"

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Today more than 55 organisations have come together to write to the Health and Social Care Minister, Matt Hancock. They are asking that the training in working with people with learning disabilities and autistic people is not a wasted opportunity.

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Learning Disability England

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Pints of progress: The brewers changing attitudes to learning disabilities

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Pints of progress: The brewers changing attitudes to learning disabilities

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BBC The Food Programme 12 Jan 2020

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The Food Programme - Pints of progress: The brewers changing attitudes to learning disabilities - BBC Sounds

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Catch up on your favourite BBC radio show from your favourite DJ right here, whenever you like. Listen without limits with BBC Sounds.

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Can we build healthier, more resilient and connected communities?

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Can we build healthier, more resilient and connected communities?

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Public Health Matters 14 January 2020

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Whether we live in cities or towns, rural or coastal areas, the communities we live in really matter for our wellbeing.

They matter because things like having a job, a decent and safe home, strong social networks and a sense of belonging play a big role in ensuring we live a happy life in good health.

The recent general election prompted much debate about the importance of communities and places and the need to listen and work alongside communities to achieve inclusive growth and prosperity in every part of England.

So, as we move into 2020, with renewed attention on communities and places, including through directors of public health, combined authorities, elected mayors and new integrated care systems, the time is right to focus on how local areas work together to build communities where everyone has the same opportunities to lead a healthy life.

Community-centred approaches to improve health and wellbeing

When we talk about "communities" we use this as shorthand for relationships, bonds, identities and interests that join people together and give them a shared stake, for instance, in a place, or a service or a culture.

And if you're wondering "what have communities got to do with health?" the answer is simple and the evidence compelling.

Community life, having friends and social connections and having a voice in decisions that affect you are all vital to your wellbeing. They provide you with feelings of control, provide a buffer against illness or help you manage existing health conditions better.

If you look at the other side of the coin you see that feeling isolated or powerless is damaging to physical and mental health. Loneliness actually increases our chances of dying early.

Effective community-centred approaches which improve health and wellbeing are about involving and empowering local communities, particularly disadvantaged or seldom heard groups.

But this goes well beyond simply asking people for their opinion.

A genuine community-centred approach involves finding out what people want and need, getting communities fully involved in the decisions that affect them as well as creating opportunities for volunteer and peer roles for local people.

The best examples we see across England recognise that every area has all manner of "assets" that can boost community life, whether that's existing voluntary groups, clubs and organisations or the skills, experience and social networks of local people themselves as well as physical, environmental or economic assets (such as buildings and facilities through to available budgets).

Building healthy, resilient and connected communities

There are a wide range of resources available for professionals who want to take this agenda forward and build healthy, resilient and connected communities across their local system and reduce persistent health inequalities.

PHE has built on our existing guidance on community-centred approaches by conducting new research, drawing on learning from local areas that are already working in a whole system way in order to have greater impact.

We've used the research to help us understand the key elements, core values and principles that are driving progress and our findings can be read via a briefing or a supporting slide deck.

We hope the insights gained from local leaders we interviewed will be useful for any government, NHS, community or voluntary professional at local, regional or national level with an interest in scaling community-centred approaches and having greater impact on health inequalities

This work is part of PHE's recently published ' Place-Based Approaches to Reducing Health Inequalities ', which advocates action at community, civic and service levels.

And alongside the guidance mentioned above you can also access a collection of practice examples and a list of whole-systems frameworks on PHE's online library.

Boosting our own community of interest

We're keen to engage with local areas who are considering or implementing community-centred approaches. You can do this by emailing us, joining our Knowledge Hub group or taking part in a range of webinars we have planned for 2020. We'll promote these webinars via Knowledge Hub and through social media, so keep a lookout throughout the year.

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Can we build healthier, more resilient and connected communities?

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Whether we live in cities or towns, rural or coastal areas, the communities we live in really matter for our wellbeing. They matter because things like having a job, a decent and safe home, strong social networks and a sense of belonging play a big role in ensuring we live a happy life in good health.

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You Don’t Look Sick: ‘Please don’t think I am rude just because I have autism'

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You Don’t Look Sick: ‘Please don’t think I am rude just because I have autism'

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Metro, Laura Abernethy 5 Jan 2020

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Rahman Kebbie, 30, from Manchester, was diagnosed with autism in March 2016.

Autism is a developmental disorder which means the brain works differently to other people.

People with autism often struggle to interact with other people, find it difficult to understand how other people think or feel, dislike things like loud noises or bright lights, get upset about unfamiliar situations and take longer to understand information, but the condition is on a spectrum and is different for everyone.

It is something that people are born with and Rahman had been living with the condition throughout his life but it wasn't until he was an adult that he got a diagnosis.

He says that growing up living with the condition but not understanding why was difficult, particularly as he is from an African community.

He tells Metro.co.uk: 'When I was a child, my behaviour was seen as quite unusual but my mum didn't want me to get a diagnosis because she was frightened about what people would think of me and was worried I would be discriminated against.

'It was difficult growing up and living with autism but not having a diagnosis because I had no support or anything like that.'

When Rahman went to university, a friend who has autism noticed that he was struggling with social interaction and it could indicate that Rahman was also autistic.

Rahman eventually went to his GP to discuss his issues and they did an initial assessment, followed by an autism diagnostic observation schedule assessment (ADOS), which involves looking at pictures and creating a story.

He was accompanied by his older brother and says that, for him, being diagnosed was quite a straight forward process.

He explains: 'I don't think my family were surprised as they'd got an understanding of what I was like when I was a kid.

'It was a tough ride, at first, but it started to get better and I was able to get support from people to help me with day-to-day life.'

Rahman now has a carer, works with a support group and has help from United Response - a charity for young people with learning disabilities, autism and mental health needs.

When Rahman started his job as a domestic assistant, his support worker from United Response Alicia Hurn, worked with him to help him feel more comfortable in the workplace.

Rahman explains: 'I have needed some support from a United Response Job Coach to help me manage relations and communication in my job.

'This included running an autism awareness training session for my managers to help them understand me and my needs, also for any other employees who are autistic.'

As well as his work, Rahman enjoys music and photography and says that being creative helps him show his feelings.

He says: 'I love producing music. I tend to use the software on my computer to produce my own music. It is my passion. It's important to be able to express myself.'

Although he now has more support in place, day-to-day life with autism is still difficult for Rahman.

He explains: 'Social communication can be difficult. Some of it is too complex. I might not know how people feel or do something unusual without realising.

'I worry I'm making people feel awkward and they might not want to talk to me. You can really easily misunderstand people when you have autism.'

Noisy environments can also be very difficult for him to cope with.

He adds: 'When I'm out, I wear noise cancellation headphones. I get overwhelmed by the noise. Sometimes I use first-class travel because train travel is extremely busy and crowded which makes me uncomfortable or have a meltdown, so I avoid that.'

He also struggles with concentration and understanding and says things like cooking can take much longer.

Living with autism has also had an impact on Rahman's mental health and he also has depression.

He explains: 'I have depression and can have a lot of mixed emotions.

'I can become angry and sometimes take things literally. Sometimes I just feel demotivated and restless. I can't stop thinking about things. Sometimes I'm short-tempered too.'

But one of the biggest difficulties is how people don't always understand his condition, because it is invisible.

He explains: 'People think that I am just being rude or impolite because of the way I act. I struggle to communicate and express things and sometimes it gets lost in translation.

'People do judge you and I wish they were more understanding of it.'

Rahman wants to raise awareness of autism and to help people understand how they can support people who live with the condition.

He adds: 'We could raise awareness through more talks with businesses and workers and setting out clear guidelines.

'Not everyone wants to give people on the spectrum the same kind of support as my workplace.

'Part of my role as a consultant for United Response involves delivering autism awareness training. Here I tell businesses what autism is and how to support workers who have the condition and how to train people to better understand autism.

'I really enjoy this work, it makes me feel good. The team are really supportive and open-minded. They listen.

'I want everyone to know you don't have to be ashamed of having autism. It's not you who is the problem. It's other people who fail to be understanding and inclusive.'

How to get involved with You Don't Look Sick

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MORE: You Don't Look Sick: 'I won't let haemophilia define me as a person'

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You Don't Look Sick: 'Please don't think I am rude just because I have autism'

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Rahman Kebbie, 30, from Manchester, was diagnosed with autism in March 2016. Autism is a developmental disorder which means the brain works differently to other people.

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United Nations Convention on the Rights of Persons with Disabilities

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United Nations Convention on the Rights of Persons with Disabilities

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Inclusion Europe 26 November 2019

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Learning Disabilitiy England 12/12/19

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On Human Rights day we stand with more than 100 other organisations signing a letter to party leaders because Human Rights are critical to all our lives. We know too many people with learning disabilities do not have their basic rights respected.

Alongside all our members we are working to change that so that everyone can live a good life as a citizen in their community.

The letter asks all party leaders to remember that "Many decisions will need to be made about what sort of country we want to be, going forward, and what relationship people have with those we place in power."

Making human rights live and real in everyone's life must be part of that deision making.

"This is people's lives .... being wasted whilst we wait for change"

Jordan Smith, LDE self-advocate representative

You can read the letter led by the British Institute of Human Rights here

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On Human Rights day we stand with more than 100 other organisations signing a letter to party leaders because Human Rights are critical to all our lives. We know too many people with learning disabilities do not have their basic rights respected.

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Mencap turns to hackathon for help with new ‘positive behavior’ app 

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Mencap turns to hackathon for help with new ‘positive behavior’ app 

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Jesscia Twentyman August 23 2019

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Back in 1958, the groundbreaking 'Brooklands Experiment', conducted by New Zealand psychologist Professor Jack Tizard in Reigate, UK, compared the progress of children with a learning disability living in a hospital with those moved to a home-like, family living environment.

After two years, the latter group showed marked improvements in social, emotional and verbal skills. The findings were published around the world and have been a huge influence on the way that children with learning disabilities have been educated, supported and cared for over the intervening six decades.

The charity behind the Brooklands Experiment was Mencap, although back then, it was called the National Society for Mentally Handicapped Children. Today, Mencap continues to support people with a learning disability and campaign for their rights, and there's an increasing digital element to that work, according to Zac Taylor, Head of Practice Strategy and Design, who has worked for the charity for almost 23 years. As he explains:

My job is about designing how we work with people with a learning disability and a big part of that is looking for ways of working that mean we can spend as much time as possible actually interacting with a person, rather than entering data into devices or filling out paperwork.

Invite to a hackathon

Mencap has a lot of work still to do here, he says, so when he was recently invited to submit an idea for a new application for a hackathon, he had plenty of options. The invitation came from Mendix, which supplies the low-code, rapid application development platform that Mencap has already used to build several new digital apps. One of these is called 'What Matters Most' and enables support workers to log details of their interactions with each client; another is a property app that helps the charity manage the buildings it owns, leases or provides services at, across England, Wales and Northern Ireland.

At the Mendix On Tour UK event, held in London in July, teams of developers got to work on a new 'Positive Behavior Support' app for Mencap. Taking part in the hackathon was a win-win prospect for the charity, according to Scott Markham, its Head of Business Improvement:

The worst case scenario was that we would simply get more awareness out there around who Mencap is and what we do - but the best case scenario was that we were going to see an app developed for us, one that we haven't got at the moment, around Positive Behavior Support, with the option to bring that app back into the business and really figure out whether it totally supports our needs, or needs to be adapted, and what we might learn from it.

Mencap works directly with around 4,300 people with a learning disability. Around one in four of them use challenging behavior (which can include emotional outbursts, violence and self-harming), and when they do, it's often as a result of finding it difficult to express their wants and needs, Taylor explains. He's a trained PBS coach himself, qualified to use this internationally recognized framework for helping people develop new, alternative, more positive skills so that they don't need to revert to challenging behaviors in the future. That involves data collection, he adds, because it's an evidence-based way of working.

Hackathon Day

On the day of the hackathon, participants drawn from Mendix customers and consulting partners were given an overview of PBS by Taylor, some case studies and some information on the types of processes that it involves. Taylor was also available to answer any questions on the day, which saw seven teams tackle the challenge of designing a PBS app, with an average of four people per team.

The products they came up with at the end of the day-long challenge were judged by representatives from both Mendix and Mencap, based on how well they'd used the Mendix platform and understood the use case, how good their products looked and how well they functioned. The top three were then asked to present their application to a team from Mencap and a winner was picked from that shortlist.

The winning team was a group from First Consulting, who designed a people-focused app to enable carers to create plans, log incidents and show key performance indicators (KPIs) relating to improvements in behavior. Strong visualisation techniques were used in the app for presenting data back to users and the team had also brought in natural language processing (NLP) to offer voice-to-text functionality, in line with that idea that what Mencap really wants to be doing is maximising its time with the people it supports, not toiling away at smartphones and laptops. Says Markham:

The winning team had most closely grasped what we were trying to get out of this exercise. All three had produced a very good application by the end of the day, but First Consulting were probably the team that had taken the most time to really understand our needs. Their application had a good look and feel and was very clearly centred on driving and reinforcing positive behavior in the people we support. Obviously, it's a bit of fun on the day - but the main thing for us was to get some really good ideas and think about how we can take those back into our organization and develop them further.

Mencap has since met with the winning team, he adds, and now has the winning product to explore further. First Consulting has also contributed some additional ideas on how the product might be improved, beyond the time limitations of the 8-hour hackathon. From there, Mencap will be consulting with PBS coaches and support workers to get their views on how the PBS app should work and how training might best be given to users. Finally, Mencap will also be looking into how this new app will fit in terms of look, feel and function with other applications in its portfolio.

For Taylor, the biggest advantage of using Mendix is that it offers a fast way for the charity to build out systems that fit with its overriding philosophy of offering truly personalized support that changes individual lives:

Other [commercially available] systems I've seen focus very much on a person's needs, but not necessarily the person themself. That's not how we work. Our focus is on quality of life in a much broader sense. Our relationships with the people we support often last for many, many years and we want to know about their wants, wishes and goals - who a person really is and what they want to achieve. That's where our technology needs to focus, and I'm not sure we would get that if we were buying a system from someone else.

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Mencap turns to hackathon for help with new 'positive behavior' app

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Back in 1958, the groundbreaking 'Brooklands Experiment', conducted by New Zealand psychologist Professor Jack Tizard in Reigate, UK, compared the progress of children with a learning disability living in a hospital with those moved to a home-like, family living environment. After two years, the latter group showed marked improvements in social, emotional and verbal skills.

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Dreamforce 2019 - Kellogg’s creates Better Days for workforce volunteers and donors with Philanthropy Cloud

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Dreamforce 2019 - Kellogg’s creates Better Days for workforce volunteers and donors with Philanthropy Cloud

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Diginomica, Jessica Twentyman Nov 21 2019

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Survey after survey shows that employees believe the companies they work for should play an active role in addressing important societal issues. But relatively few of these studies shine a light on how keen those employees are to roll up their own sleeves, get involved and donate their own time or money to good causes.

At Salesforce, executives believe that companies could be doing a lot more to encourage their workers to become 'citizen philanthropists', and by combining corporate and citizen philanthropy, effect even more positive change in the world.

That's the thinking behind Philanthropy Cloud, a platform launched by Salesforce in 2018 in partnership with mega-charity United Way. It's designed to empower employees to influence and contribute to corporate philanthropy, so that other companies can replicate Salesforce's own ' 1-1-1' model, by which it pledges to donate 1% of equity, 1% of products and 1% of employee time annually to charitable causes.

One of the earliest companies to roll out Philanthropy Cloud is food giant Kellogg Company, whose Director of Philanthropy and Social Impact Stephanie Slingerland highlights the company's formidable corporate social responsibility (CSR) track record. This has focused on the issues of food security and hidden hunger that stretches back more than 100 years to its 1906 founding.

Earlier this year, Kellogg's chairman and CEO Steve Cahillane announced the next step in the company's 'Better Days' strategy, which sees it donate both money and products to food banks and school breakfast programs and support sustainable agriculture projects worldwide, among other initiatives. In this 'next-generation commitment', Cahillane has pledged that Kellogg's will create Better Days for 3 billion people worldwide by the end of 2030.

But like many organizations, Kellogg's needed a way to engage more stakeholders - and in particular, its own employees - on achieving these goals through volunteerism and personal giving. More importantly, it wanted to create a year-round effort, one that went way beyond an existing annual campaign in the Fall. Slingerland says:

We've been working for 90 years with United Way, and we'd had a lot of conversations with them around achieving that year-round push, and they had this terrific partnership with Salesforce on the Philanthropy Cloud tool. So this was the perfect opportunity for us to take on that platform to engage employees in a more 'always-on' way.

Kellogg's rolled out Philanthropy Cloud in April this year as one of the first Salesforce customers to do so, branding its implementation as the 'Better Days Hub'.

Meet Philanthropy Cloud

When an employee logs into Philanthropy Cloud, they get access to a dashboard that shows their personal giving in monetary amounts and their volunteering hours. They can also see their company's overall contributions, giving them a real sense of their contribution to wider company efforts. When they make a donation or log volunteer hours, the impact numbers change immediately, giving them a snapshot of real-time impact.

Their personal portal on Philanthropy Cloud is also a place where they can keep updated on company campaigns and stories, as well as search for campaigns, events and funds they may wish to support. It's a far cry from the dog-eared sign-up sheets on break room bulletin boards and round-robin emails between colleagues that are far more common at other organizations. Slingerland explains:

When I log on, it recognizes that I'm Stephanie. It knows I work at Battle Creek, Michigan. It knows I care about these particular causes - so in addition to learning about our corporate cause around food security, I can say that I'm particularly interested in education, for example. Then, it will show me initiatives around that in my local community. Through our partnership with United Way, who are at work in pretty much every community in the United States and elsewhere, they are able to help support us with local opportunities and content, so it's a much richer experience for employees.

At the same time, she adds, Kellogg Company gets a lot of good data on the back end, helping Slingerland and her team to track and measure philanthropic work underway within the workforce. Without needing to rely on a time-consuming mess of Excel spreadsheets, they know exactly who is volunteering, how many hours they contribute, to what causes, and how many volunteers show up to a particular event.

This sort of information, she says, enables them to 'close the loop', by analysing data and feedback and then tailoring future opportunities and campaigns in line with employee interests. The Better Days Hub is increasingly the launchpad for more skills-based volunteering for employees, too, she says.

For example, our employees are very passionate about food security and that shows up in different ways according to the individual: they may be packing boxes at food banks, or working in community kitchens. But some of them may want to do a little more, so what we're now doing is focusing on skills-based volunteering. In one case, a colleague in our communications team was looking to get more experience in developing communications plans, and we were able to connect her with a food bank here in Battle Creek that was looking to change its name and branding. It's still in line with our focus on tackling hunger, but it goes a little deeper. So we're now talking with United Way in developing more skills-based volunteering opportunities - because some people may want to just go to the food bank and pack boxes, but for others, we want to create newer, richer options for them to engage with.

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Dreamforce 2019 - Kellogg's creates Better Days for workforce volunteers and donors with Philanthropy Cloud

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Survey after survey shows that employees believe the companies they work for should play an active role in addressing important societal issues. But relatively few of these studies shine a light on how keen those employees are to roll up their own sleeves, get involved and donate their own time or money to good causes.

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People with learning difficulties quiz Brighton and Hove election candidates

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People with learning difficulties quiz Brighton and Hove election candidates

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Brighton & Hove Independent. Online Article 02 December 2019

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Sarah Booker-Lewis, local democracy reporter

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People with learning difficulties quiz Brighton and Hove election candidates

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Getting out and about was a hot topic for general election candidates at hustings for people with learning difficulties. Candidates standing for election in the Brighton Pavilion, Brighton Kemptown and Hove parliamentary constituencies spoke at the event. It was hosted by the Grace Eyre Foundation and organised by Brighton and Hove Speak Out's Being Heard...

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CGTN, Nicole Johnston, 29 December 2019

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The UK's largest food bank charity says more people are relying on free food parcels than ever before to survive. The Trussell Trust says changes to the UK's welfare system is driving people deeper into debt and poverty.

A three-year study by the organization found 94 percent of food bank users are destitute, that means they can't afford to eat regularly. The Trust also says three out of four households are suffering from ill health or disability. And one in ten food bank recipients have a learning disability.

Andrea Bell started a UK charity in the north-east city of Sunderland a few months ago. But she says there's been so much demand for help, as well as people donating food, that she's had to open a warehouse. Bell says insecure work, such as contracts with no guaranteed hours, is one factor forcing people into poverty.

"A lot of contracts are zero hours, you never know where you are. People are relying on a certain amount of wages and then next week it's not there," Bell explains.

Every evening Andrea Bell and her volunteers hand out warm meals to around 100 people out of a small kitchen in Sunderland. She is part of a wider inititive that has grown significantly in recent times. 10 years ago the Trussell Trust ran 57 food banks, it now has 424.

Assistant Pastor at the Bethany Church, Daniel Alcock, says he sees parents and children every week who don't know how they will afford to put food on the table.

"I'm seeing more and more children walk through the food bank door particularly over the school period when schools can't or don't give out hot meals during the day. Parents are feeling the crunch," Alcock says.

Last year the British government introduced a new welfare payment system called Universal Credit. Under it people have to wait up to five weeks before they receive any money from the government.

Daniel Alcock says many people can't survive for 35 days without government assistance and that food banks have become a "band-aid" but they don't solve the problem.

"We supply food but where is the gas and electricity coming from? If I give someone a bag of pasta you can't eat it raw," Alcock points out.

In many parts of the UK food banks and community kitchens have become a way of life. The people that run them believe that without this volunteer-led assistance many people would have nothing to eat at all.

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The UK's largest food bank charity says more people are relying on free food parcels than ever before to survive. The Trussell Trust says changes to the UK's welfare system is driving people deeper into debt and poverty. A three-year study by the organization found 94 percent of food bank users are destitute, that means they can't afford to eat regularly.

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At Christmas, the every day barriers disabled people face seem impenetrable 

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At Christmas, the every day barriers disabled people face seem impenetrable 

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Metro, Samantha Renke, 24 December 2019

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In all honesty, Christmas can be a really difficult time for me.

Not only have I lost a parent around this time, but I was also born with a genetic condition, Osteogenesis Imperfecta, which causes my bones to break at the slightest knock.

It means I have spent many Christmases with broken bones. This was mostly as a youngster, but as an adult I'm still anxious about the thought of drunk Santa and his elf falling on top of me and giving me a gift I'd rather not have - a trip to A&E.

For many disabled people, Christmas can be a difficult and lonely time. According to the Office of National Statistics, the proportion of disabled people who report feeling lonely 'often or always' is almost four times that of non-disabled people.

The leading learning disability charity Mencap has also crucially identified that people with learning disabilities are seven times more likely to feel lonely in comparison to non-disabled peers and this Christmas are calling for urgent action to be taken to tackle the loneliness epidemic faced by people with a learning disability.

I face daily attitudinal and physical barriers as a disabled woman, but these are only intensified around Christmas and new years. It can come about from something as simple as being able to attend work Christmas drinks. We have to think about whether the venue is accessible, who to ask at work about making sure it is, and if it isn't we can feel like a burden or nuisance to our colleagues.

The bad weather can also mean many have to stay indoors. Have you ever tried to push a wheelchair through snow and ice, or steer an electric wheelchair through wet leaves that haven't been swept away?

I have and I can only compare it to hitting black ice with your car - terrifying and dangerous.

I've personally found the overcrowding of bars, restaurants and Christmas markets excluding, too. People often comment that they 'didn't see you down there,' there's no chance of you ever reaching the bar, and more often than not you find the disabled bathrooms and lifts being used and abused by non-disabled people because it's so busy.

And that's just my experience. People with autism may find the loud sounds of Christmas festivities anxiety inducing; going out for a Christmas roast often means being confronted with a lack of easy read menus; Christmas high street shopping is also a no go due to aisles overloaded with wrapping paper or Christmas knickknacks making it difficult to navigate for anyone in a chair or visual impairment; care facilities often face staff shortages during the Christmas break, leaving some without the care they need and resulting in a lack of independence.

Vijay Patel, who is Campaigns Assistant at Mencap and has a learning disability told me: 'I was lonely for years. I ended up being stuck at home a lot because I didn't have anyone to support me to go out. I was beginning to give up hope.

'Since getting a job, I have made new friends and I am more confident and independent. This year I will be going out with friends.'

I urge everyone to be mindful of those individuals that may feel isolated this festive period. I appreciate we are becoming more environmentally conscious and stopped sending Christmas cards, but make sure you show you care in other ways.

Volunteering in your community is a great way to meet new people and maybe learn from one another.

Feeling awkwardness towards disabled people is no longer a valid excuse to isolate and exclude that colleague, neighbour or person in your class who is part of the disabled community.

I've gone all out for Christmas this year. Even though the festive period is hard for me, I love it all. I'm that annoying person who sings Christmas tunes in mid-November, insists you wear a Santa jumper when you come to visit, and even bought a second Christmas tree for my bedroom, it's pink, glittery and as FABULOUS as you can get.

The happy family, laughter with friends, work parties and Christmas markets, that's all I ask for.

I appreciate we don't live in an equal society and there are many physical barriers that people with disabilities face that prevent us participating fully in Christmas activities, but asking someone to a Christmas dinner and researching venues that are accessible doesn't cost the world and can make a big difference in combating isolation.

It's important to note that as we approach a new year, disability does not discriminate and each and every one of us could become disabled at any time.

If that were you, how would you want others to treat you?

MORE: The Government's £10 Christmas 'bonus' is an insult to disabled people

MORE: Last Christmas, my birth mum thanked my adoptive parents for raising me

MORE: What films are on TV on Christmas Eve, Christmas Day and Boxing Day?

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At Christmas, the every day barriers disabled people face seem impenetrable

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In all honesty, Christmas can be a really difficult time for me. Not only have I lost a parent around this time, but I was also born with a genetic condition, Osteogenesis Imperfecta, which causes my bones to break at the slightest knock. It means I have spent many Christmases with broken bones.

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All inpatients with learning disability or autism to be given case reviews

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All inpatients with learning disability or autism to be given case reviews

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Gov.uk online article, 5 November 2019

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All inpatients with learning disability or autism to be given case reviews

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Every inpatient with a learning disability or autism in a mental health hospital will have their case reviewed over the next 12 months.

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Transforming care through workforce development

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Transforming care through workforce development

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Northumbria University. Press release, 11 December 2019

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Positive Behavioural Support (PBS) is an evidence-based approach which is recognised as best practice in supporting people with learning disabilities and behaviours that challenge.

Through assessing the wider social, physical and individual contexts in which such behaviour occurs, it aims to facilitate the understanding of behaviour in order to develop support.

The overall goal is to improve a person's quality of life and the lives of people around them and minimise the chances of behaviour that challenges happening in the first place.

Due to a lack of guidance about how best to support people to learn about the PBS approach and no nationally-agreed standards about the training requirements or qualifications and experience individuals or services need to have, the North East and North Cumbria Transforming Care Partnerships workforce group commissioned Northumbria University to co-develop, validate, co-deliver and evaluate a range of accredited learning programmes in Positive Behavioural Support for the North East and North Cumbria.

The project was initiated as part of the Department of Health and Social Care's national Transforming Care programme, which aims to improve the lives of children, young people and adults with a learning disability and/or autism who display behaviours that challenge, including those with a mental health condition.

Northumbria University, NHS England North East and North Cumbria and the North East and Cumbria Learning Disability Network, worked together to adopt a system-wide workforce development approach which focuses on the education of individuals, and developing infrastructure in organisations for positive behavioural support to be enabled in practice.

As such, the positive behavioural support approach will become a way of life across health, social and education care in the North East and Cumbria.

It also aims to reduce the need of inpatient care by upskilling the existing health, social and education workforce in adopting this approach and enable improved support for people with learning disabilities and their families.

Dr Anne McNall, former PBS programmes Project Lead and Associate Professor at Northumbria University, led the scoping exercise to understand need and the innovative workforce development approach used in this project: "Purely training staff in a particular approach is often ineffective and does not lead to sustainable change as it does not address organisational and other barriers to implementing new practice; this requires whole system change such as cultural shift, the development of new policies, practices, ongoing supervision and support for staff to work in new ways.

"The development of innovative regional PBS workforce development manager posts working in partnership with the University supported staff to develop not only new knowledge, but apply their learning in practice and receive regular support to lead change in their organisations and staff teams."

The University developed different levels of PBS learning programmes to reflect the fact that PBS is often provided by a variety of people with a range of competencies.

The first cohort of 32 graduates studied on the Level 6 or Level 7 programme, meaning they have gained an Advanced Diploma or Post Graduate Certificate respectively. PBS learning programmes at this level are intended for those Practice Leaders who are responsible for leading and supporting organisations to use PBS, with other programmes available at level 4 for practice facilitators who lead teams, support workers and family carers.

Following an interim evaluation, it is reported that the programmes have resulted in a range of positive impacts at individual, team, organisational and system-wide levels. These include positive changes for those being supported in terms of better and more consistent support, reduced behaviours that challenge and increased quality of life. Better engagement and relationships with families have also been reported.

Judith Thompson, Network Manager and Assurance Lead for the North East and Cumbria Leaning Disability Network, said: "I am immensely proud of the graduates. Developing and delivering this post graduate course is testament to what can be achieved when organisations work collaboratively that ultimately positively impacts on quality of life for people with learning disability.

"The Learning Disability Workforce Development Managers have played a huge role in providing work-based supervision and support in addition to delivering the university based programmes for each of the graduates hugely influencing organisational change."

The nine-month-long Level 6 and Level 7 programmes have been delivered through blended learning. This involves a combination of University-based induction time, e-learning, locally delivered workshops, alongside guided study, practice-based learning and supervision with academic and competency assessments.

Graduates from the programmes are employed by a variety of 27 different social care service providers, ranging from national, widely recognised charities such as Mencap through to smaller, family-run organisations including Gateshead-based Ashdown Care.

Speaking about the PBS programme, Level 7 graduate and founder of Resolve Care in County Durham, Anne Graham, said: "PBS mirrors what we do in our homes and the course has really helped make the knowledge transfer more fluid. The resources were great and helped us to put theory into practice so that PBS flows right through our organisation."

Fiona Kelly, Mencap Area Operations Manager for Redcar and Cleveland, said: "The course was truly transformative. We thought we knew a lot about PBS, but we learnt so much more, all of which is completely translatable to the workplace. We have already noticed the difference what we have learnt is making within the organisation."

Operations Manager and PBS Practitioner at Positive Support for You, Sue Paton, commented: "This course was the most practice enhancing academic course I have ever experienced. Fantastic, hard work, bereft there was not a further year of study!"

Nicole Bruce, Therapeutic Services Manager at Careline Lifestyles, added: "The PBS programmes bring people together in roles that can be quite isolating. It's great to study alongside a peer group who have the same vision of being dedicated to improving quality of life."

Senior Operational Manager at West House, Cumbria, Alan Scott, said: "PBS encourages a commitment to cultural change and reduced restrictive practice. We see every minute as an opportunity to focus on improving quality of life. Through implementing the principles of PBS, one of our patients who previously required 3-1 support, is now able to live independently with assistive technology."

Jill Chaplin, Consultant Psychological Therapist at Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, said: "We are proud to have been closely involved in the development of this innovative programme. The courses are being independently evaluated, and early analysis suggests a really positive impact on staff's competencies and confidence. We are looking forward to working with the University and colleagues from Tees, Esk and Wear Valley NHS Foundation Trust during 2020, when the level 7/6 courses will be made available to some of our staff working in specialist community teams. This is the next exciting step in promoting the systemic change needed to improve the lives of people with learning disabilities and their families."

Northumbria University offers a wide range of accredited and non-accredited short courses, specialist training and Continuing Professional Development (CPD) programmes that are based on the ground-breaking research of its academic experts. Courses can be delivered locally, nationally and internationally, for individuals or employers with single or multiple learners. For employers with group requirements Northumbria can collaborate with organisations to provide on-site customised CPD programmes, tailored to meet specific needs.

Those interested in finding out more about working with Northumbria should visit Northumbria.ac.uk/cpd
About Northumbria University

Northumbria University, Newcastle is a research-rich, business-focused, professional university with a global reputation for academic excellence. To find out more about our courses go to www.northumbria.ac.uk

Northumbria is one of the largest universities in the UK with more than 30,000 students from over 130 countries

If you have a media enquiry please contact our Media and Communications team at media.communications@northumbria.ac.uk or call 0191 227 4604.

About the PBS Programmes at Northumbria University

Dr Norman McClelland, Senior Lecturer in the department of Nursing, Midwifery and Health at Northumbria University, is the current Project Lead for the PBS programmes.

Dr Stephen Noone, Senior Lecturer in the department of Nursing, Midwifery and Health at Northumbria University, has played a key role in the development of the PBS programmes as a subject specialist. Dr Noone leads the face-to-face teaching, while NHS Workforce Development Managers Alison Branch, Melissa Sherring and Lynne Jones offer direct, regular supervision to students.

Stephen McStay, Senior Lecturer in the department of Nursing, Midwifery and Health at Northumbria University, is the PBS Programme Lead.

About the Transforming Care programme

Following the Winterbourne View scandal, the Department of Health and Social Care signed an agreement to create a programme of action to transform services so that vulnerable people no longer live inappropriately in hospitals and are cared for in line with best practice.

The Transforming Care programme aims to improve the lives of children, young people and adults with a learning disability and/or autism who display behaviours that challenge, including those with a mental health condition.

Through the development of Transforming Care, the North of England was identified as a fast-track region, an initiative which enabled local leaders to start making changes quickly.

The North East and North Cumbria Transforming Care Partnerships workforce group was established and it agreed to adopt the principles of PBS throughout health and social care, establishing a number of projects, including the commissioning of regional PBS leadership education programmes in collaboration with Northumbria University.

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Transforming care through workforce development

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Positive Behavioural Support (PBS) is an evidence-based approach which is recognised as best practice in supporting people with learning disabilities and behaviours that challenge. Through assessing the wider social, physical and individual contexts in which such behaviour occurs, it aims to facilitate the understanding of behaviour in order to develop support.

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Finding work when you are autistic and have a learning disability

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Finding work when you are autistic and have a learning disability

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BBC News, video, 23 December 2019

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'I'm a hard worker and decent person, I deserve a job'

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One man explains why mucking out the pigs on a farm is his dream job.

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A £40m Government scheme to help disabled people back into work has been criticised for excluding those on benefits

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A £40m Government scheme to help disabled people back into work has been criticised for excluding those on benefits

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iNews, 22 December 2019

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The launch of a new programme to help disabled people fimd employment has come under fire for only targeting those not on benefits

The huge investment is designed to help disabled people learn new skills (Photo: Getty)

A new £40m scheme to help thousands of disabled people get into work has come under fire for excluding those on benefits.

The programme, which the Government says will assist around 10,000 unemployed people with disabilities, will provide confidence building activities, coaching and even therapy sessions if needed.

Under the Intensive Personalised Employment Support (IPES) programme, participants will be provided with employment support to help enhance their skills, training and work experience placements - with six months of continued contact once they've entered the workplace.

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The voluntary scheme is open to disabled people facing challenges getting into work and who are unlikely to move into a role in the short-term - but only if they aren't receiving benefits.

While we welcome the Intensive Personalised Employment Support programme to help disabled people into work, it should be available to people with a disability who access benefits
Dan Scorer
It has been criticised by a disability charity and a support group for only targeting those who don't need state support.

Not enough support

Dan Scorer, Head of Policy and Public Affairs at Mencap, said while the charity welcomed the initiative, it needed to be more widely available.

"While we welcome the Intensive Personalised Employment Support programme to help disabled people into work, it should be available to people with a disability who access benefits," Mr Scorer said. "We know from our work supporting people with a learning disability into employment that access to benefits they are entitled to, including Personal Independent Payments, enables them to get into work.

Charity says more needs to be done to help disabled people on benefits (Photo: Getty)

"In addition, the programme is only targeted at 10,000 people. If the Government is to meet its ambition of getting a million disabled people into work, this vital support needs to be extended to many more disabled people who need specialist support to prepare for and enter work."

Ginette Squires wrote: 'who would this scheme actually help, those who already have the means to exist without benefits.'

Mike Cobley added: '£10 million for a national scheme is a derisory amount of money' and another member, Barry Carr, wrote: 'So what about people who claim ESA and PIP because they just aren't capable of work?'

Initiative welcomed

The initiative has been supported by Work and Pensions Secretary of State Therese Coffey however, who said: "No-one should face barriers to reaching their full potential."

She said the investment would be "vital in opening up the opportunities" for those disabled people for whom employment "seems an unachievable ambition", adding: "I want to see everyone prosper and hope that by the end of 2020 participants will have the confidence and continued support to embrace the opportunities that are theirs for the taking."

Therese Coffey is pleased with the investment (AFP/Getty Images)

Officials at the Department for Work and Pensions (DWP) said IPES would be taking a "two-pronged approach" to helping people access work.

During the 21 months of support, those enrolled will be given personalised assistance, such as coaching, therapy sessions or confidence building, before moving on to receive employment tips to help them gain skills, secure training and arrange work experience placements.

In a first for DWP disabled unemployment support, a key worker will remain in touch with participants even after they have moved into a job or have started their own business, with contact continuing for six more months.

Scheme is designed to help disabled people find work (Photo: Getty)

We will also provide in-work support for both the individual and their employer to ensure a fulfilled experience
Mark Hughes
The programme will be offered through providers including Remploy, FedCap, Shaw Trust, Reed and Manchester-based The Growth Company, which will be running the scheme in the North West.

Chief executive Mark Hughes said: "In this region alone IPES will be supporting over 1,700 people with disabilities and complex barriers into sustainable employment.

"The programme will support people every step of the way, from initial consultancy through to gaining and sustaining employment.

"We will also provide in-work support for both the individual and their employer to ensure a fulfilled experience."

According to the DWP, more than 1.3 million disabled people have moved into work since 2013, with record employment among those in the UK with disabilities.

"People with a disability can work and can make fantastic employees with the right support," added Mr Scorer, "yet currently less than 6% of people with a learning disability known to their local authority are in paid employment.

"A job means more than just a wage, it's about being included and valued in society. People with a disability in the workplace are also less likely to take sick days and are reliable, trustworthy and productive, and even boost morale of their teams."
Additional reporting by the Press Association.

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Government excludes disabled people on benefits from £40m work scheme

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The huge investment is designed to help disabled people learn new skills (Photo: Getty) A new £40m scheme to help thousands of disabled people get into work has come under fire for excluding those on benefits. The programme, which the Government says will assist around 10,000 unemployed people with disabilities, will provide confidence building activities, coaching and even therapy sessions if needed.