Tag Archives: learning disabilities

The Independent View: ‘Benefits on Trial’: DWP Injustice Exposed

‘Benefits on Trial’ is based on my work in Cornwall since 2012 as a volunteer advocate with adults who have a learning disability. In recent years, that work has increasingly concerned benefits cases: helping people with their PIP and ESA applications; accompanying them to assessments; requesting reconsideration of decisions; and taking cases to the tribunal stage. That experience – particularly of tribunals – triggered the writing of ‘Benefits on Trial’.

The book describes how six people – for all of whom names have been changed to protect their identities – have to battle with the Department for Work and Pensions (DWP) whose system, with built-in hurdles, is loaded against them. Two of them – Danny who has ABI and Thomas who has Down’s syndrome – figured prominently in my previous book, ‘Austerity’s Victims’. The others are Ben, Jon, Tony and Denise: Ben has fibromyalgia and ME as well as being on the autism spectrum; Jon has Global Developmental Delay; and Tony and Denise both have an unspecified learning disability.

‘Benefits on Trial’ builds up a detailed picture of each of the six people, their current lives and events in their past which have helped to shape them. The experience of Denise described below – her early years and her application for benefits – serves as an example of the inhumane treatment suffered by all six at the hands of the DWP.

When she was eight, she had the first of what turned out to be many epileptic seizures. Because of the way in which they have affected her memory, she cannot remember either much of the detail of her life after the seizures started or what her life was like previously. A member of staff at her day centre, however, who went to the same secondary school recalls both appalling bullying there and later when she was nearly twenty a sexual assault that was taken to court.

Not the start in life that most of us enjoyed and one that cries out for compassion. Instead, from the state, the reverse was inflicted upon her. She, like all the others in this book turned down for PIP, was left with an income which no-one should be asked to survive on. Her £107.50 in 2018 was only 26.86% of the UK median per week, 28.27% of the equivalent median for the South West and 39.99% of the Joseph Rowntree Foundation’s UK Minimum Income Standard.

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Negative impact of Covid-19 on people with a learning (or intellectual) disability

This is a version of a post, revised by the author, that originally appeared earlier this week.

The covid-19 pandemic has highlighted the unacceptable health inequalities faced by people with a learning (or intellectual) disability. This has been brought home by the JCVI decision not to prioritise them adequately during the vaccination programme and has been highlighted in an article in the British Medical Journal on which this blog draws heavily for the benefit of a lay readership.

It is estimated that only about 250,000 adults are registered as having a learning disability with their GP’s, although there are estimated to be c.1.5 million people in this country with this particular diagnosis.  One of the serious indications of learning disability is an inability or difficulty in reading the written word, a difficulty shared by many more who don’t meet all the criteria to have a learning disability, including for example, over 50% of those in prison in the UK. Inability to read is often accompanied by other limitations on comprehension, which helps to explain why people with learning disability are slow to understand when they are ill and to seek or be offered medical care.  The result is reduced life expectancy – people with learning disability die on average 25 years earlier than the general population.

The charity Beyond Words produces books and leaflets that tell stories with pictures to help people with learning disability lead their lives.  It has produced a series of books since the outbreak of COVID to explain about COVID – the symptoms, how to keep safe, vaccinations etc.

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Building an inclusive society #LDWeek19

This week is Learning Disability Week. The theme is sport and inclusion.

According to a Mencap survey of 18-35-year-olds, one-third spend less than an hour outside of their homes on a Saturday. Many feel isolated, excluded and lonely. Can you imagine only getting out for an hour and being at home the rest of the day? 49% of the survey respondents want to get out more but can’t.

We have 1.4 million people with learning disability in the UK. They are often marginalised and misunderstood. A lot of work still needs to be done to break down the stigma around learning disability.

Enabling those with learning disability to join in leisure activities such as sport has many benefits. It improves mental and physical health, helps build self-worth and confidence and improves communication and social skills. Additionally, including people with learning disability in leisure provision breaks down barriers and improves social attitudes towards learning disability. Misconceptions around learning disability exist because many people have not met or interacted with someone with a learning disability.

Positive direct contact with people with a learning disability is an effective way of improving attitudes towards them. We found that an inclusive sports programme helped to challenge negative views of people with a learning disability, and created bonds between the participants with and without a learning disability.

As some regular readers will know, I chair the board of the Fragile X Society. Fragile X is the leading genetic cause of learning disability. The Society works to raise awareness of Fragile X and its range of effects on intellectual ability. I have learned a lot, and continue to grow as a person, through my interaction with those with Fragile X.

Building an inclusive society is about having relationships with people who are not like us. It is about being willing to explore and wonder at the gifts every one of us brings to our communities. One lady with Fragile X has the most fantastic sense of humour. She doesn’t get maths, but she can be hilarious, loves the theatre and shopping. Another man loves to talk, go out for meals and kick a football around. Getting to know the person and seeing beyond the disability is key. It enriches all of our lives.

Mencap is running a new survey for adults with learning disability. Here is a link if you or someone you know would like to take part.

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The Learning Disabilities Mortality Review Annual Report

The Learning Disabilities Mortality Review Annual Report was published recently by the Healthcare Quality Improvement Partnership. In it are harrowing statistics of people with learning disabilities dying far too young.

The report highlights the extraordinarily high incidences of preventable death. The Connor Sparrowhawk case has brought this to public attention recently: a young man with learning difficulties left in a bath unattended, he drowned whilst having an epileptic fit.

Between July 2016 and November 2017, 1311 deaths were put forward for review, often by a Learning Disability Nurse. Of those, 27% …

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#TreatMeWell campaign launched today

Mencap has launched its Treat Me Well Campaign today, calling for those with Learning Disabilities to be given reasonable adjustments in hospitals.

The facts are shocking. Every year, 1200 people with a learning disability die avoidably in hospital care.

I blogged this morning on the disgraceful state of PIP and ESA assessments, many suffered by those with learning disability. This is another aspect of how people with learning disability are not listened to, are not enabled, and are sidelined in assessments. This video gives you a good idea of the issues:

I am on the Board of the Fragile X Society. Fragile X, a genetic condition, is the leading inherited cause of learning disability. Thousands of people with Fragile X will have had the experiences show in this video.

It is very easy to make modifications. Allow extra time for appointments. Use simple language. Break explanations down into smaller, understandable sentences. Allow time for mental processing. It’s what people with learning disabilities are asking for.

The Treat Me Well report is well worth a read. Mencap’s research showed (p.25)

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Opinion: The assessment boycott and the need to protect students with disabilities

I have just started university and all is going well, except in one particular area. I have not received a single piece of work back from my university tutors since my course began. This because of a assessment boycott instigated by the University and Colleges Union (UCU). They are is a dispute with the group that represents the heads of most universities in the UK (UUK) over pensions. I am in the same boat as thousands of other university and college students in the UK. this is not only very annoying it is also very disruptive the my university education. As a student with Specific Learning Difficulties (SpLDs), this includes myself as I have Dyslexia and Dyspraxia. This is putting a massive amount of undue extra pressure on me and many others at the beginning of our university lives. I have made a brief video which explains this further:

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