Jon Sparkes OBE, Chief Executive of learning disability A learning disability is to do with the way someone's brain works. It makes it harder for someone to learn, understand or do things. charity Mencap, said:
‘This annual report An annual report is a booklet which an organisation writes every year. It tells you what they did that year. is an important moment for transparency and learning, but it comes at a time of real uncertainty about the future of the LeDeR programme*.
‘We’re increasingly concerned that amid mergers and reorganisations, drastic
cuts
Cuts are when there is less money to pay for things like clubs and support.
are being made to budgets and staffing, specialist learning disability roles are being lost, and the programme is being deprioritised.
‘The LeDeR programme was developed for a reason. People with a learning disability die on average nearly two decades earlier than the general population, and too many deaths are avoidable and caused by indifference. The programme has helped drive improvements, but there is a long way to go - people are still dying 19 years too young. This is literally a matter of life and death, and risks undoing years of hard-won progress.
'We urgently need to know how the Government The Government are the people who run the country. They decide how much tax people should pay for things and how things like the National Health Service should work. will maintain independent scrutiny and, importantly, understand and tackle the causes of avoidable deaths. People with a learning disability need to know their lives are valued. Bereaved families need confidence lessons will be learned from their loved one’s death, and that other families will not have to face the same loss in future.
‘National and local action must not be weakened at a time when people with a learning disability continue to die far too young,’
ENDS
* According to Mencap analysis, over 21,000 deaths of people with a learning disability have been notified to and reviewed by the LeDeR programme since it started in 2016.
The Learning from Lives and Deaths report - known as LeDeR (‘leader’) - is an annual investigation into the death of every adult with a learning disability and
autism
Autism is a disability. Autistic people find it difficult to understand what other people think and feel. They also find it difficult to tell people what they think and feel. Everyone with autism is different.
, with the aim of learning what happened, improving care, reducing health inequalities and preventing future premature deaths.
‘Death by indifference’, a 2007 report by Mencap, detailed how institutional
discrimination
Discrimination is when someone is treated differently (usually in a bad way) because of things like their disability or their religion.
in the
NHS
The NHS is the National Health Service. The NHS gives free healthcare to everyone in the UK and includes things like your GP (doctors) surgery and hospitals.
led to preventable deaths of people with a learning disability. This led to an independent inquiry and the (LeDeR) programme being established in 2015.
Note to editors
About Mencap
There are 1.5 million people with a learning disability in the UK and they deserve to live their life to the full. So Mencap supports people with a learning disability to succeed in the things that matter to them. To ensure that people with a learning disability are not left behind at any stage of their life, we campaign A campaign is when people work together to try to change something. for a fairer society; work with families and partners to build inclusive communities; and we deliver person-centred services. We’ve spent 80 years changing lives. Now, with Mencap 2030, we’re changing the future.
What is a learning disability?
A learning disability is a reduced intellectual ability which affects someone for their whole life. Typically, people with a learning disability need more time to learn and process information. They may need extra support to develop skills, complete tasks and interact with others, or they may have more complex needs requiring round-the clock care. The level of support needed is different for everyone and may change during a person’s lifetime.
Learning disability is NOT a mental illness or a learning difficulty. Often, the term ‘learning difficulty’ is wrongly used in place of ‘learning disability’. Having a learning difficulty (such as ADHD or
dyslexia
Dyslexia is a learning difficulty. People who have dyslexia can find it hard to read, write and spell.
) may mean a person learns at a different pace or in a different way BUT – unlike a learning disability - it does not affect a person’s intellect.
With the right support, most people with a learning disability can lead happy, healthy, independent lives. At Mencap, it’s our mission to remove societal barriers and shatter misconceptions to make this more possible for more people.
Mencap’s guide to reporting on Learning Disability
When it comes to creating content with people with a learning disability, we know many people feel nervous about saying and doing the wrong thing. Our guide for journalists, covers everything from up-to-date facts and figures to the right language to use. It also includes tips on how to work with people with a learning disability to gather the best content.
For further information, please contact Mencap’s media team on: [email protected] or 02076 965414 (including out of hours).
