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Useful resources

Speak Up

SpeakUp have 2 resources which can help people with learning disabilities and/or autism understand what abuse is, what to do if you are a victim of abuse and how to get support. The booklet called ‘Abuse’ is an EasyRead guide to abuse which is colourful and has lots of pictures to help people understand what abuse is and what to do if someone is abused.  

    

'It can still happen here: systemic risk factors that may contribute to the continued abuse of people with intellectual disabilities'; a highly commended paper in the Tizard Learning Disability Review

The purpose of this paper is to reflect on the response to the scandal of abuse in services for people with intellectual disabilities in the light of research evidence and analysis.

The research was carried out through critical reflection and a review of literature, in particular, recent research into possible indicators that a service is at risk of becoming abusive is used to test the hypotheses and implied solutions that are currently being adopted.

The findings found some of the responses to recent scandals are necessary but not sufficient to prevent future harm. Furthermore, some of the proposed solutions may actually increase the likelihood of further abuse. Prevention of abuse requires a broader and more evidence-based response.  More >



People 'kept in asylums despite community care pledge'

Thousands of people with learning disabilities are still languishing in institutions, despite Government promises to provide care for them in the community in the wake of the Winterbourne View scandal, a report by Stephen Bubb, the Association of Chief Executives of Voluntary Organisations (ACEVO) called 'Time For Change – The Challenge Ahead', has warned.  

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Respond

Respond works with children and adults with learning disabilities who have experienced abuse or trauma, as well as those who have abused others, through psychotherapy, advocacy, campaigning and other support. Respond also aims to prevent abuse by providing training, consultancy and research. They have a helpline 0808 808 0700 on Fridays, 12.30 to 4pm. Their website has lots of easy read information as well.


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Unlocking sexual abuse and learning disabilities


This booklet, produced by Enable Scotland, covers how to help adults with learning disabilities deal with sexual abuse and its consequences. It provides basic information for families and care staff about what to do when they suspect or know that someone has been abused or when someone discloses abuse. It also explains what might happen after abuse is reported and the support and assistance that might be available.


There is a separate accessible booklet for adults with learning disabilities called 'Surviving sexual abuse'. It can be read alongside this booklet.





Action Against Cruelty

Action Against Cruelty is a website and online network that brings together multi-agency guidance on all aspects of the problem from definitions, detection, prevention and safeguarding to criminal and civil proceedings and aftercare, as well as under-reporting, communication with victims and perpetrators and supportive communities.






Looking into Abuse: Research by People with Learning Disabilities

This three year participatory research project has been a collaborative venture between the University of Glamorgan, Rhondda Cynon People First and New Pathways, and has been funded by the Big Lottery. The idea for the research came from people with learning disabilities and they have been actively involved at all stages of the research process.
The aims of the project were to: develop better ways for people with learning disabilities to find support after being abused and to prevent abuse; develop more detailed information on how participatory research works for all concerned; disseminate research findings to people with learning disabilities and professionals. Easyread and executive summaries also available.






Loneliness and Cruelty report

Loneliness and Cruelty is a groundbreaking study based on in-depth interviews by frontline practitioners across the country. The report shows that people with learning disabilities living independently in the community experience a disturbing range of harassment, abuse and related crime with alarming frequency. The perpetrators in the main are local people, neighbours, often young people and schoolchildren. Incidents happen when people are out and about in the community, but also in and around their homes. Above all, these incidents are straightforward cruelty. The report can be downloaded for free but you will have to register.








Guidance to support integrated and person-centred care for people with health and social care needs

Think Local Act Personal, commissioned by the Department of Health, the Local Government Association and the Association of Directors of Adult Social Services and in association with Coalition for Collaborative Care, have launched a major new online tool to support this approach and to aid broader implementation of the Care Act.

The personalised care and support planning tool is aimed at commissioners, planners, clinicians and practitioners across the health and social care system grappling with the complex changes needed to deliver person-centred, coordinated care.




Independent advocacy: Research and practice

A new briefing from SCIE for commissioners and providers of independent advocacy under the Care Act includes: Emerging good practice, new research and key steps to improve commissioning. Under the Care Act, local authorities must arrange an advocate if people have substantial difficulty in being fully involved and if there is no one appropriate available to support and represent their wishes.  

Toolkits to help adults with learning disabilities navigate services in Wales

A series of new guides aimed at helping adults with a learning disability and their carers access health and social care services has been launched by Mencap Cymru in conjunction with Cardiff University’s School of Law.

The toolkits were developed from a recognition that carers are often overwhelmed by the breadth and complexity of the framework for accessing services. The guides will be used by Mencap Cymru’s Regional Officers, to support their work assisting people with a learning disability and their carers to access the services to which they are legally entitled.


Unlocking sexual abuse and learning disabilities

This booklet, produced by Enable Scotland, covers how to help adults with

learning disabilities deal with sexual abuse and its consequences. It provides basic information for families and care staff about what to do when they suspect or know that someone has been abused or when someone discloses abuse. It also explains what might happen after abuse is reported and the support and assistance that might be available.

There is a separate accessible booklet for adults with learning disabilities called 'Surviving sexual abuse'. It can be read alongside this booklet.





Action Against Cruelty

Action Against Cruelty is a website and online network that brings together multi-agency guidance on all aspects of the problem from definitions, detection, prevention and safeguarding to criminal and civil proceedings and aftercare, as well as under-reporting, communication with victims and perpetrators and supportive communities.





Looking into Abuse: Research by People with Learning Disabilities

This three year participatory research project has been a collaborative venture between the University of Glamorgan, Rhondda Cynon People First and New Pathways, and has been funded by the Big Lottery. The idea for the research came from people with learning disabilities and they have been actively involved at all stages of the research process.
The aims of the project were to: develop better ways for people with learning disabilities to find support after being abused and to prevent abuse; develop more detailed information on how participatory research works for all concerned; disseminate research findings to people with learning disabilities and professionals. Easyread and executive summaries also available.





Loneliness and Cruelty report

Loneliness and Cruelty is a groundbreaking study based on in-depth interviews by frontline practitioners across the country. The report shows that people with learning disabilities living independently in the community experience a disturbing range of harassment, abuse and related crime with alarming frequency. The perpetrators in the main are local people, neighbours, often young people and schoolchildren. Incidents happen when people are out and about in the community, but also in and around their homes. Above all, these incidents are straightforward cruelty. The report can be downloaded for free but you will have to register.




Recognising quality in independent advocacy

The QPM works in conjunction with the Advocacy Code of Practice, enabling providers to demonstrate how they are meeting the different standards set out in the code. Since the first edition was launched in 2008 over 80 organisations have been awarded the QPM.


Details of organisations who currently hold the QPM Award and who can display the QPM Award logo can be viewed here:





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Unlocking sexual abuse and learning disabilities

This booklet, produced by Enable Scotland, covers how to help adults with
learning disabilities deal with sexual abuse and its consequences. It provides basic information for families and care staff about what to do when they suspect or know that someone has been abused or when someone discloses abuse. It also explains what might happen after abuse is reported and the support and assistance that might be available.

There is a separate accessible booklet for adults with learning disabilities called 'Surviving sexual abuse'. It can be read alongside this booklet.





Action Against Cruelty

Action Against Cruelty is a website and online network that brings together multi-agency guidance on all aspects of the problem from definitions, detection, prevention and safeguarding to criminal and civil proceedings and aftercare, as well as under-reporting, communication with victims and perpetrators and supportive communities.





Looking into Abuse: Research by People with Learning Disabilities

This three year participatory research project has been a collaborative venture between the University of Glamorgan, Rhondda Cynon People First and New Pathways, and has been funded by the Big Lottery. The idea for the research came from people with learning disabilities and they have been actively involved at all stages of the research process.
The aims of the project were to: develop better ways for people with learning disabilities to find support after being abused and to prevent abuse; develop more detailed information on how participatory research works for all concerned; disseminate research findings to people with learning disabilities and professionals. Easyread and executive summaries also available.





Loneliness and Cruelty report

Loneliness and Cruelty is a groundbreaking study based on in-depth interviews by frontline practitioners across the country. The report shows that people with learning disabilities living independently in the community experience a disturbing range of harassment, abuse and related crime with alarming frequency. The perpetrators in the main are local people, neighbours, often young people and schoolchildren. Incidents happen when people are out and about in the community, but also in and around their homes. Above all, these incidents are straightforward cruelty. The report can be downloaded for free but you will have to register.




Recognising quality in independent advocacy

The QPM works in conjunction with the Advocacy Code of Practice, enabling providers to demonstrate how they are meeting the different standards set out in the code. Since the first edition was launched in 2008 over 80 organisations have been awarded the QPM.


Details of organisations who currently hold the QPM Award and who can display the QPM Award logo can be viewed here:





everybody hurts

'Everybody Hurts'

Pembrokeshire People First, a campaigning group run by and for people with learning disabilities, have launched a powerful and moving film where the members defy stereotypes by discussing their hopes and dreams for the future, alongside the soundtrack 'Everybody Hurts'.




Self assessment first: Sharing the stories of self advocates about staying healthy, being safe and living well

The Improving Health and Lives Public Health Observatory, part of Public Health England, have published the findings from the first Joint Health and Social Care Learning Disability Self Assessment Framework announced in Transforming Care Action as Action 38. This report presents the findings of self assessment ratings made by Partnership Board areas against indicators in: staying healthy; being safe; and living well. Some of these stories are the words of people with learning disabilities. Others have been written by carers or advocates about their own experiences, or on behalf of people with learning disabilities. The stories cover a range of experiences, both positive and negative.




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Scottish Independent Advocacy Alliance

Live in Scotland and  looking for an advocate? This website has a 'Find an advocate' page and offers a lot more information and advice about advocacy.





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Your Guide to Advocacy

Asist, an advocacy organisation in Staffordshire wrote a book about advocacy to help their clients understand better what they could expect from their advocate.

BILD worked with Asist to make a few changes so that the book could be used by any advocacy group. We think this will save groups having to produce their own individual information. 

They cost £1 each plus postage. If you want to order this book you please email us at




Staying Strong advocacy cover

Staying Strong

'Staying Strong' was produced by the National Forum of people with learning difficulties (2011), and gives a lot of useful information about self advocacy.

The National Forum has also produced a follow-up document, 'Staying Strong - for how long'.




The BILD Factsheet on advocacy

Advocacy can take a number of forms, but independent advocacy such as citizen advocacy, peer advocacy and self-advocacy should be differentiated from the roles played by family and professional carers.




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Social Care Institute for Excellence papers about advocacy

SCIE Report 24: Personalisation and learning disabilities: A review of evidence on advocacy and its practice for people with learning disabilities and high support needs

SCIE Position paper 6: Supporting self-advocacy.



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Advocacy in Social Care

In 2011 the Equalities and Human Rights Commission produced a report, 'Advocacy in Social care for groups protected under equality legislation'.






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Unlocking sexual abuse and learning disabilities

This booklet, produced by Enable Scotland, covers how to help adults with
learning disabilities deal with sexual abuse and its consequences. It provides basic information for families and care staff about what to do when they suspect or know that someone has been abused or when someone discloses abuse. It also explains what might happen after abuse is reported and the support and assistance that might be available.

There is a separate accessible booklet for adults with learning disabilities called 'Surviving sexual abuse'. It can be read alongside this booklet.





Action Against Cruelty

Action Against Cruelty is a website and online network that brings together multi-agency guidance on all aspects of the problem from definitions, detection, prevention and safeguarding to criminal and civil proceedings and aftercare, as well as under-reporting, communication with victims and perpetrators and supportive communities.




Looking into Abuse: Research by People with Learning Disabilities

This three year participatory research project has been a collaborative venture between the University of Glamorgan, Rhondda Cynon People First and New Pathways, and has been funded by the Big Lottery. The idea for the research came from people with learning disabilities and they have been actively involved at all stages of the research process.
The aims of the project were to: develop better ways for people with learning disabilities to find support after being abused and to prevent abuse; develop more detailed information on how participatory research works for all concerned; disseminate research findings to people with learning disabilities and professionals. Easyread and executive summaries also available.




Loneliness and Cruelty report

Loneliness and Cruelty is a groundbreaking study based on in-depth interviews by frontline practitioners across the country. The report shows that people with learning disabilities living independently in the community experience a disturbing range of harassment, abuse and related crime with alarming frequency. The perpetrators in the main are local people, neighbours, often young people and schoolchildren. Incidents happen when people are out and about in the community, but also in and around their homes. Above all, these incidents are straightforward cruelty. The report can be downloaded for free but you will have to register.







Autism in the workplace - Report on current practice

Business Disability Forum (BDF) announced the launch of its latest research report: Square holes for square pegs: Current practice in employment and autism. The report examines current practice in the employment of people with autism amongst BDF’s membership organisations and makes key recommendations for employers when adopting inclusive practice.

The research draws attention to the need for autism awareness in the workplace and the importance of removing barriers for individuals with autism.  

 


Why it's time to investigate the overlap between autism and ADHD

The most influential psychiatric handbook prohibited a joint diagnosis of autism and ADHD until 2013. But the link could be significant, as investigated by research fellow and writer Laurence O'Dwyer.  



Good Autism Practice

The 11th Autism-Europe International Congress, organised by The National Autistic Society, took place in Edinburgh last weekend. This reminded us to remind you that all the articles in the Special Scottish Edition of Good Autism Practice are available free to  Good Autism Practice is dedicated solely to promoting good practice with children and adults with autism and Asperger's syndrome.

Each journal includes articles that encourage good and innovative practice and are written by practitioners, academics, parents and people with autism.

Romanian language book on autism published 

The University of Bucharest has recently published a book entitled 'Identification of Needs Among Families with Children Diagnosed with Autism.


Supporting students with autism in the classroom: what teachers need to know

There are a number of barriers to providing better and appropriate support to meet the educational needs of students with autism, says this article by The Conversation. These include: funding, lack of knowledge and training, lack of specialist support staff and time, lack of appropriate resourcing and class sizes. 

The use of flexible and individually tailored educational approaches is crucial. This requires that teachers have an array of adjustments and resource options which can be implemented both in and outside of the classroom environment. Input from a multidisciplinary team that includes educational specialists and allied health professionals should also be available.  

Find out more information


Acknowledging autism: Moscow foundation film provides comfort

People with autism and their families often feel like outcasts in Russia: They are not very welcome in public places and going to the theater or cinema can become a big ordeal. However, the first movie theater for children with autism and their families recently started operating in Moscow.  

Find out more information.


Charity launches new autism-friendly banking initiative

Scottish Autism has launched a new initiative to support the inclusion of people with autism by addressing some of the unique challenges they face when dealing with banks and other financial institutions.

The charity, which seeks to help those diagnosed with autism to lead full and enriched lives, has created a series of short animated videos highlighting some of the common experiences that come with a trip to the bank such as waiting in queues, speaking to different people and having to remember PIN codes. The videos include advice on how to keep money safe and guard against fraud as well as highlight how an individual can transact online or over the telephone with their bank.  

Watch the videos. 

Choice and control the autism friendly way

This new BILD book, by Sue Hatton, clearly explains the path that needs to be taken in order to work effectively with individuals with autism. 

Beginning by being autism aware, learning to become autism friendly and on to being able to work in a truly autism intelligent way. It does this in particular by challenging the more common held views on choice and control and shows what really needs to happen for many people with autism is for choice to be limited and restricted and even at times withheld altogether. 

The people with autism who made significant contributions to this book tell us how stressful and anxiety making quite simple everyday choices can be and theirs is the voice that needs to be heard. 

Find out more information and order the book


Patient versions of SIGN guideline on autism spectrum disorders

Scottish Intercollegiate Guidelines Network (SIGN) is now consulting on the following patient versions of the guideline on autism spectrum disorders:

  • Autism: A booklet for adults, partners, friends, family members and carers
  • Autism: a booklet for young people
  • Autism: a booklet for parents and carers

 

The drafts and feedback form can be found on the SIGN website >

The Economist: How not to squander the potential of autistic people

Autism is a condition that defies simple generalisations. Except one: the potential of far too many autistic people is being squandered. Although around half of those with autism are of average intelligence or above, they do far worse than they should at school and at work.

The amount of public money spent studying autism is shockingly modest. Britain’s government spends a trivial £4m ($5.6m) a year. America shells out around $200m a year—about what it costs to look after 100 severely autistic people for a lifetime. Such sums are dwarfed by the opportunity cost of having so many potentially productive people dependent on others. Beautiful or otherwise, an autistic mind is a terrible thing to waste. 

Find out more information

10 rules to ensure 'challenging behaviour', a thought provoking book

'10 Rules for ensuring people with learning disabilities and those with autism develop 'challenging behaviour' is a full colour, pocket-sized booklet that aims to spark thought and discussion on how we can better understand those with autism and/or with learning difficulties and their needs.

Written in the voice of someone with autism, this booklet directly addresses the many practices and assumptions that that cause so many problems for children and adults with autism and learning difficulties and their family, friends and carers.

The ‘ten rules’ concept sets out to be deliberately provocative and is the first in a series that will address the topic of autism and how not to do things. 

Find out more information.

Choosing Autism Interventions: A Research-Based Guide

Choosing Autism Interventions: A Research-Based Guide provides an accessible evidence-based overview of the most commonly used interventions for children and adults with autism. It summarises best clinical practice from the National Institute for Health and Care Excellence (NICE) and gives a set of tools to help you evaluate interventions for yourself. It is the first guide of its kind to meet the requirements of the NHS Information Standard. 

Find out more information. 

How to help autistic students succeed at university

Campus life can be particularly challenging for those with autism, but there are simple steps academics can take to reduce anxiety and confusion. 

This include focusing on strengths, being aware of the sensory environment, avoiding ambiguity, planning ahead, managing group work, being accommodating and educating yourself.

Find out more information 


Fim about what it's like to have autism

Starring ten year old Alex (pictured),who has autism, a new film produced by the National Autistic Society aims to portray what it's like have autism. "I hope it makes people aware of autism", said Alex, who finds it difficult to cope in busy environments and can get upset if there are too many people or if it's too noisy. 

Find out more information 

Scottish Learning Disabilities Observatory 

The Scottish Learning Disabilities Observatory has been set up to provide better information about the health and health care of people with learning disabilities and people with autism in Scotland. The Observatory will generate and translate information into knowledge, that is designed to inform actions, practice and policy to benefit people with learning disabilities and people with autism.  

Find out more information 

Study highlight 'enormous hidden crisis' of early deaths of people with autism

People with autism are dying earlier than the general population, often through epilepsy or suicide, a charity has warned. Citing recent research carried out in Sweden, the charity Autistica
described the problem as an "enormous hidden crisis". The study, in the British Journal of Psychiatry, suggested autistic people die on average 16 years early.  

Download the report >


Holding an event for people with autism? Here's what you need to know

  • Don’t worry about introductions
  • Make sure the event isn’t dominated by one or two people
  • Give everyone an equal chance to contribute
  • Be creative
  • Contact people in advance 

 

Find out more information 

Launch of Virtual Tours for people with autism

Accessing new places can make people with autism feel anxious. Autism West Midlands, local authorities and Google Street View have created virtual tours to help people with autism prepare their journey and familiarise themselves with new locations. The virtual tours are designed to give people with autism an opportunity to familiarise themselves with a venue before they visit it.  

Find out more information

Assessing for autism

In SEN magazine, psychologist Mark Chapman looks at the vital contributions families and school staff make to the autism assessment process. He clarifies the process of autism assessments, signs of autism at home and at school, and how parents and schools can help and supporting during the process. 

Find out more information 

Project enhances support for people with autism and sight loss

The Autism and Sight Loss project, a collaborative project between the Royal National Institute of Blind People, Scottish Autism and Edinburgh Napier University, has shown that educating autism practitioners in vision awareness has increased access to eye care and improved day-to-day support services for people with autism and sight loss. The aim of the project has been to evaluate a training model for better identifying and supporting people with autism and sight loss. 

Find out more

Is a ‘Spectrum’ the Best Way to Talk About Autism?

"Charting where an individual falls on the autism spectrum is nearly impossible. After talking to doctors, epidemiologists, self-advocates, and anthropologists, I learned that the more you try to pin down what the autism spectrum actually looks like, the looser your grasp on it will become", Rose Evelet writes in a blog. 

Find out more.

SEN and Disability in the Early Years Toolkit

The toolkit supports early years providers in implementing the special educational needs and disability reforms. The toolkit is based on the statutory requirements and the guidance from the EYFS, the SEN and the disability frameworks; draws on a range of practice guidance; and includes useful tools and reflective tasks for early years practitioners.

Download the toolkit


How to manage autism in the workplace

The story of parents and activists who fought for autism acceptance

The story of autism is many stories, from doctors, to parents, to people with autism themselves. Journalists Caren Zucker and John Donvan examine that history in their new book, "In a Different Key: The Story of Autism."

Anorexia and autism

The invisible link between autism and anorexia

On the surface, autism and anorexia couldn’t seem more different. People with autism are supposedly not attuned to the emotions of others, whereas people with anorexia are commonly thought of as oversensitive young girls hell-bent on fulfilling cultural ideals of thinness. But strip off the misconceptions, and the two conditions are far more similar than anyone believed, says Janet Treasure, a psychiatrist and director of the eating disorders program at Maudsley Hospital, London.  

Find out more information 

Comedian talks about life with his autistic son

In this Radio 4 programme, comedian John Williams finds unexpected joy in his autistic son's view of life, despite the inevitable struggles. "I have learnt far far more about the human condition, and what it truly means to be alive from just being with those with learning diabilities than I have from any eminent teacher or book", said John. 

Listen to the interview

STAR SEN Toolkit

This toolkit is a free online resource that offers practical advice and teaching activities to help secondary schools explore internet safety with young people with autism spectrum disorders. Developed in partnership with Leicester City Council’s Building Schools for the Future Programme, they worked closely with three Leicester schools to develop the resource. The Toolkit is free to download online and the teaching activity ideas are provided in Word so you can edit and adapt them to suit your learners. 

Download the toolkit


From Like to Love for Young People with Asperger's Syndrome (Autism Spectrum Disorder)

This book addresses this issue in practical terms and provides carefully designed activities for parents to work through with their children to help them to understand and express affection. Their child will learn to identify his or her own and others' comfort and enjoyment range for gestures, actions and words of affection and the different ways to express feelings for someone, appropriate to each relationship and situation. The activities are simple, straightforward, and very carefully structured, so that they can be undertaken at the pace that works for the individual family. The book also guides the adult through the challenges faced by the child, leading to greater understanding and confidence in their relationship with their child, and increased ability to nurture the child's ability to form engaged relationships and friendships with others.

Find out more


Aspergers video

Film gives insight into how young people with Asperger's think

The AM3 group consists of young people aged 12-17 who have Asperger’s Syndrome. Teaming up with Fixers, a national charity that supports young people to tackle issues that matter to them, the group came up with the idea of creating two short films. The films give an insight into how young people with Asperger’s think, including how it can feel for them if they encounter difficulties when interacting with people.  

Watch the video here 


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National Austistic Society

A website that is full of information about autism and Asperger Syndrome, as well as guidance, resources and useful links.


Find out more on the NAS website.




The Autism skills and knowledge list has been developed jointly by Skills for Care, Skills for Health and the National Autistic Society to help enhance awareness of autism and improve skills among workers in generic health and social care services. This work is part of a wider range of on-line training resources funded by the Department of Health to increase awareness and understanding of autism across all public services.

Find out more and download the document on the Skills for Care website


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Improving access to social care for adults with autism

This guide, from the Social Care Institute of Excellence (SCIE), looks at how social care services can improve access to adults with autism. It is based on research that explores the barriers to services experienced by people with autism. It covers people with autism, whether or not they also have a learning disability. The guide suggests ways services can improve, identifying how best to meet the goals of the government's autism strategy.

Find our more on the SCIE website


The Autism Act 2009: developing specialist skills in autism practice

A guide, published in Learning Disability Practice in October 2011 and supported by the Department of Health, that  is aimed at people in a specialist role who will lead the planning, development and commissioning of services with local authorities and GP consortia. This guide also discusses the development of skills and knowledge in autism practice.

Download a copy. 


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Transition toolkit

This toolkit, produced by The Autism Education Trust, is a summary of the common issues surrounding transition for young people on the autism spectrum, as well as a guide to the considerations that should be taken by those supporting them. We offer some practical strategies to support transition periods as well as provide a list of useful links to other organisations and support materials.

Download from The Autism Education Trust website.


Autism: Recognition, Referral, Diagnosis and Management of Adults on the Autism Spectrum. NICE clinical guideline no. 142

Autism is a lifelong condition with particular issues for adults, which are addressed by this NICE guideline. While some people are diagnosed in childhood, a large proportion of adults with autism find obtaining a diagnosis in adult difficult or impossible. Under-recognition of autism in adults can lead to inadequate care, masking of co-existing mental and physical health problems, and to social and economic exclusion. This guideline aims to address these widespread problems and increase the uptake of interventions by adults with autism to enable them to live more independent lives.

The guideline contains all the evidence on which the recommendations were based, including further data on a free CD-ROM which includes: characteristics of included studies; profile tables that summarise both the quality of the evidence and the results of the evidence synthesis; all meta-analytical data, presented as forest plots, and detailed information about how to use and interpret them.

View the NICE clinical guideline online


Autism Online Resource Centre

The Department of Health funded a series of on-line training resources and booklets to increase awareness and understanding of autism across all public services.
Organisations used this funding to produce a range of quality materials to enable frontline staff to better recognise and respond more effectively to the needs of adults with autism.


Find out more about the online resource


First National local authority self-assessment of services for people with Autism 

The Improving Health and Lives: Learning Disability Observatory has published the results of the first national local authority self-assessment exercise for services for people with autism.The aim of the exercise was to establish a baseline position against which to monitor progress in the implementation of the autism strategy, Fulfilling and Rewarding Lives.

Find out more on the IHAL website.


Asperger’s Syndrome Foundation

The Asperger’s Syndrome Foundation (ASF) is a small charity set up to support and educate parents and non-specialist professionals about the condition. It also runs training workshops for adults. The foundation’s website includes information sheets on a number of important topics, include diagnosis, girls with Asperger’s syndrome, bullying, sensory issues, motor clumsiness, anger management and strategies for social behaviour.

Visit the Asperger Syndrome Foundation website


"FindMe" iPad ‘app’ helps autistic children

A game for the iPad has been launched aimed at improving the social skills of children with autism as young as 18 months. FindMe is a simple game that challenges children to find onscreen character in different scenarios. The game is designed to encourage players to focus on other people and their needs, which people with autism can find difficult.

App developers and education and informatics researchers from the University of Edinburgh collaborated on the game, which they hope will help children with autism practice basic socialising skills before entering nursery or primary school.

FindMe is available for download for free from Apple’s App Store



The Autism Directory gets a makeover

The Autism Directory is a registered charity and provides an online website that signposts autism families to all the help and support available on the internet, and from organisations, charities, businesses and people around the UK. The Directory has also launched a website that allows parents, charities, professionals and organisations to share their suggestions as to what has helped them, support groups they know off, any businesses that are autism friendly, events that are coming up and lots more.

Find out more on The Autism Directory website


Ask Ellie on Autism

Ellie Barker is a Good Morning Britain presenter at ITV West Country. In this week's column, Ellie is asked about waits for autism diagnoses by reader Letitia Bright.  

Find out more information





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Self-directed support and BME communities

Self-directed support is a new system.
It’s about people being in control of
the support they need to live their life
as they choose.

This fact sheet provides information
about how self-directed support can
be introduced to people from Black and
Minority Ethnic (BME) communities.

Download the fact sheet.

There are lots of other fact sheets on the In Control website about selfdirected support.


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The PAST Project

The aim of BILD's PAST project  was to find out why people from Black, Asian, and Minority Ethnic communities do not access personal budgets, to find examples of excellence in advocacy within these communities and spread the knowledge of good practice through networks and contacts. 

Find out more and download the report on our PAST Project page.



Reaching and Supporting Diverse Communities

Hft have produced a guide to meeting the needs of people with learning disabilities, and family carers, from newly arrived, Black, Asian and other Minority Ethnic (BME) communities.

Hft’s Family Carer Support Service was commissioned by the Valuing People Support Team to develop this resource, to provide a range of information about meeting the needs of families from BME and seldom heard communities.

Find out more and download the guide from the Hft website.



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Race equality in practice resource pack: Supporting Advocates Working With Cultural Diversity

Produced by North Wales Race Equality Network as part of the British Institute for Learning Disabilities and the Welsh Assembly Government Advocacy Grants Programme.

“A ‘colour-blind’ approach, or assertion that ‘we treat everyone the same’, is often operated within organisations. Such statements may, however, disguise the fact that organisations have either not considered the needs of minority ethnic communities or have chosen to ignore them.

What is needed, instead, is an approach which moves away from the notion of ‘an average citizen’ to an acknowledgement of the diversity of need and required services”

Download resource pack



July 2012: Reaching Out: to people with learning disabilities and their families from BME communities

The Reaching out to families project of the Foundation for People with Learning Disabilities set out to find new ways of addressing the inequalities that people with learning disabilities from Black and Minority Ethnic Communities (BME) and their families experience in health and social care. The project paid particular attention to the role of third sector organisations and usedaction learning techniques to identify good practice.

Download the report from the Foundation website.

 


May 2012:
Here to Stay

The Here to Stay project addresses the gap in the knowledge about the health and social care needs of people with learning disabilities from ethnic minority and new migrant communities living in England.

If you work with people with learning disabilities in education, health or social care in the public, private or voluntary sector, we would like to ask you to complete a survey and share your views and experiences.

Take the survey.
More information about the project.  



 

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Care and Support Jargon Buster 

The Care and Support Jargon Buster is a plain English guide to the most commonly used social care words and phrases and what they mean. The definitions were developed and tested by a steering group that included people who use services, carers, representatives from local authorities, information providers and key stakeholders from across the social care sector.

Find out more on the think local act personal website.



Communication passport for school

Kate Sanger’s daughter Laura was removed from classes in the past at her school because she couldn't cope with her environment and the he staff had a poor understanding of the reasons for her behaviour. Kate developed the communication passport for her daughter and now everyone supporting her adheres to the behaviour support plan within the passport.

This has made a huge difference. giving her daughter a voice and making life much better for her and the staff supporting her. You can see the template by following the links below. Many schools are adopting it and the Education Office of the Scottish Government has shown interest in promoting it.

Find out more information.

Visit the mycommpass Facebook page. 


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Involve Me

The Involve Me resource aims to increase the involvement of people with profound and multiple learning disabilities (PMLD) in decision making and consultation. The resource is the result of a three year project, supported by the Renton Foundation and run by Mencap and BILD.

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The Rix Centre's Big Tree

The Big Tree is dedicated to sharing information and ideas about multimedia and what it can do for the learning disability community.

The site is run by the Rix Centre, a  research and development centre and independent charity that is based at the University of East London's Docklands campus.

The Big Tree is designed for people working with and supporting people with intellectual disabilities, including social carers, teachers, web developers, family members and advocates.

Find out more on the Big Tree website.


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Oxfordshire Total Communication

Are you a support worker, parent or carer? Do you know or work with someone with a learning disability? This website is just for you!

 

Here you will find a host of information, links, free resources which you can download, and ideas from other people in Oxfordshire who are using Total Communication to communicate effectively with people with a learning disability.

Find out more on their website.



Gloucestershire Total Communication

Gloucestershire Total Communication offers training courses in communication. The process aims to ensure a 'common language' is adopted for all people to help make a consistent and positive difference to everybody's lives.

Find out more on their website.



Clear and Easy: Making information easy to read and understand 

Clear and Easy is a handbook for making written information easy to read and understand for people with a learning disability. The handbook, produced by Learning Disability Wales, is for anyone who is, or should be, producing accessible information for people with a learning disability. Clear and Easy will help you whether you are from a local advocacy group, a public sector organsiation, or a private service provider, such as a bank.

Find out more on their website.


Animation aims to make it easier to understand the NHS framework

NHS Greenwich Clinical Consulting Group, along with Enabled City and NHS England, have produced an animated graphics films to help explain the national framework for NHS Continuing Healthcare. The film is about 30 minutes long, and there are 2 versions.  The 'continuous play' version is the whole film. The 'playlist version' is the same film divided into sections, and you can move between the sections by using the menu control. The film uses pictures, audio and text, and there is no spoken information that is not also shown in text.  

Watch the continuous play version.

Watch the playlist version. 

Find out more on their website. 

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Communication and people with the most complex needs: What works and why this is essential

This guide was commissioned by Mencap in partnership with the Department of Health as part of the programme of work set out in Valuing People Now to ensure people with the most complex needs are included. The guide is aimed at commissioners, to support them in commissioning support and services which meet the communication needs of people with the most complex needs, including people with PMLD. However, it will also be useful for family carers, frontline staff and people with a learning disability.

Find out more about this and download a copy of the report or the easy read version, on the Mencap website.


The Office for Disability Issues (ODI)

The Office for Disability Issues (ODI) leads the government’s vision of achieving equality for disabled people. They are a cross-government organisation that works with government departments, disabled people and a wide range of external groups.

Their website gives information about inclusive communications, offering advice and resources.

Find out more on their website.


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How to make information accessible

There is a guide to making information accessible produced by Change, called 'How to make information accessible - a guide to producing easy read documents'.

You can download a copy from their website

 

 


Making written information easier to understand for people with learning disabilities

Department of Health document published in November 2010 giving guidance for people who commission or produce Easy Read information.

Download a copy from here


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Hearing from the Seldom Heard

People with learning disabilities face many barriers in being able to complain about the services they receive. However people with profound and multiple learning disabilities and other complex communication needs are not going to be greatly helped simply by the production of an integrated complaints procedure or an 'accessible' complaints leaflet, however well designed.

The Hearing from the Seldom Heard project aimed to look at how to overcome barriers and create listening cultures within organizations to hear from those who are seldom heard.

Find out more about the project and download the resources on this website.

The Hearing from the Seldom Heard resource, 'Communication tools and approaches' has a long list of links to further, useful, information.



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Netbuddy Apps for the iPad

Netbuddy has an information page about communications applications that you can run on the Apple iPad computer.

Find out more on the Netbuddy website.

 

The five good communication standards

The Royal College of Speech and Language Therapists have published ‘Five good communication standards: Reasonable adjustments to communication that individuals with learning disability and/or autism should expect in specialist hospital and residential settings’.

The standards are intended as a practical resource to support families, carers, staff, professionals, providers and commissioners to make a difference to the lives of individuals using specialist residential services.

View the standards



Award winning Social Care Jargon Buster

Think Local Act Personal’s Social Care Jargon Buster lists 52 of the most commonly used words and phrases in social care and what they mean.

The definitions were developed and tested with people who use services, carers and family members and those who work in social care to ensure they were easy to understand.

The Jargon Buster has won an award from the Plain English Campaign for how it describes complicated social care words in plain, simple language.

View the Jargon Buster


Shining a light on Augmentative and Alternative Communication

Report on research undertaken by the University of Sheffield with Barnsley Hospital aimed to provide robust evidence of how many people in the UK could benefit from AAC and to provide for the first time a picture of current AAC service provision in the UK.

Read the report online 


Breaking Bad News website

A website that can be used by practitioners, families and carers to ease the process of breaking bad news to people with intellectual disabilities

Find out more on the Breaking Bad News website


A Safe Community

Disabilinet is a new social networking site developed specifically for disabled people. The community website has been specifically designed to allow people with disabilities to communicate with each other and share experiences in a safe and secure environment. Disabilinet offers specific news, views and topics relevant to less able people.

Find out more on the Disabilinet website





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The Knowledge Base at the British Association for Supported Employment

The knowledge base is an open, freely accessible trove of information and resources, both for supported employment and for disability / employment support generally. These resources include practical guidance and support, policy and research reports, evaluations, framework documents and links to relevant content elsewhere on the web.

In addition to contributions from BASE and its member organisations, the knowledge base also acts as an archive for initiatives such as Valuing People Now.

Find out more on the BASE website.


Empowering 'offenders' to move into employment

Step Up is a project empowering people with a learning disability or communication difficulty aged 16-30 who have offended or are at risk of offending to move into employment.

This peer-led project takes learnings from the successful Raising Your Game and Employ Me projects. Step Up engages and prepares this group to move into the workforce through social action initiatives and 1:1 support.

Find out more on the Mencap website.


This is your future

Leonard Cheshire Disability, a charity that helps to support people learning disabilities look for employment, launched 'This is your Future' this week - a career guide specifically designed for students with disabilities. The guide is full of useful information about starting a career and covers looking for work, the recruitment process, being in a job and the different types of support available at each of these stages. 

The guide is available to download here 


Checklist for autism friendly environments

The Checklist for Autism Friendly Environments is an innovative assessment tool designed to support organisations who want to become autism friendly. It helps organisations measure the effectiveness of their environment and asks if they can consider whether there are simple, low cost solutions that can be made to improve the lives of people with autism within their service. The guide was produced by South West Yorkshire Partnership NHS Foundation Trust in partnership with Kirklees Council.

The checklist is available to download here 


Employment - disclosing an autism diagnosis to employers

In this filmed interview, Catherine Leggett, Employment Training Consultant with the National Autistic Society, gives her top 5 autism tips for autistic people on disclosing their diagnosis to employers. Catherine offers advice on what information to provide employers and how and where to get further support.  

Watch the interview > 

Disability employment gap: Government won't meet manifesto targets until 2065

A new report from the all-party parliamentary on disability (APPG) highlights the Government will miss its manifesto target to halve the disability employment gap

The report entitled ‘Ahead of the arc’ highlights the current disability employment gap of 32 per cent will reduce by just 2.6 percentage points by 2020 on current rates of progress, and that it will take until 2065 to reach the target of 16 percentage points. 

Download the report >

Valuing People Now employment resources

The Department of Health has developed tools to help Local Authorities support people with learning disabilities into work.

To access the resources visit the Department of health website.


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Make the Move

Make the Move is a website aimed at young people with learning disabilities in Scotland. The website aims to be a helpful guide for young people at any stage of their careers, from thinking about a job to gaining promotion and progressing further.

www.makethemove.org.uk/


 

Your rights at work

This film was made with a group of people with learning disabilities by the Disability Law Service. It shows what people with learning disabilities can do if they have problems at work. There is also an easy read guide to download as well.

Find out more and see the film 



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miEnterprise

miEnterprise is the UK's leading supported self-employment specialist. It is a social enterprise that operates as a mutual marketing co-operative.

"We set miEnterprise up because we know that there are a lot of people with earning disabilities and other disadvantages in the jobs market who would like to work. We also know that not very many people are working, and getting paid!"

Visit the miEnterprise website to find out more.


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In Business Quick guide to Self-employment

This publication is part of the In Business Easy Business Planning series and gives basic information about what you might need to set up a business or be self employed. A list of organisations who may be able to provide help and advice is also included.

Find out more and downnload the guide on the Foundation for People with Learning Disabilities' website. There is also a page about the In Business service.


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Micro-enterprises

An information fact sheet from In Control about how self-directed support can help you to set up your own business.

Open the leaflet.

There are lots more fact sheets from In Control available on these pages on their website.

They also have audio versions of their fact sheets available here.



Films about employment from Inclusive Films


It’s Working in Dudley:tells the story of people with learning disabilities making a real success of paid work.

 

Self Employment for People with Learning Disabilities:shows people working for themselves and succeeding with a variety of different business types.

 

Self Employment for People with Mental Health Problems: we meet people who have chosen to work for themselves, find out about their journey, the support they have had and the pros and cons of this approach.

Watch them on the Inclusive Films website


 Disability Employment Strategy Consultation 


The British Association for Supported Employment has published its proposals in response to the Government's review of its disability employment strategy. BASE's recommendations cover commissioning, benefit assessment, contracted delivery, employer engagement, transitions from education, and workforce issues.

Download the proposals from the BASE website

Halving the Gap? A review into the Government's proposed reduction to Employment and Support Allowance and its impact on halving the disability employment gap

A review, 'Halving the gap' was published by three Peers in the House of Lords, Baroness Meacher, Baroness Grey-Thompson and Lord Low, which found “no evidence to suggest that people with disabilities can be incentivised into work by cutting their benefits”.

Download the review 'Halving the Gap' >

Download the easy read version of 'Halving the Gap' >





Evernoor solutions

Evermor Solutions support for access to higher education

Evermor solutions provides comprehensive support for people who want to study at a Higher Education Level, and have a life changing or permanent injury, long term physical or mental health condition or disability.  

Courses are distance learning (online) or campus based and may be studied either part time or full time.

Click here to download an information leaflet in pdf format

Learning Disabilities Core Skills Education and Training Framework 

The learning disabilities core skills education and training framework has been launched.  Developed by Skills for Health, Health Education England (HEE) and Skills for Care, commissioned by the Department of Health, the framework sets out the essential skills and knowledge necessary for all staff involved in learning disability care. The framework will enable organisations to:

  • Identify key skills and knowledge for roles and team
  • Plan and design content for education and training
  • Commission education and training
  • Conduct training needs analysis

 

 Download the framework >

Effects of hearing impairment on children with Down’s syndrome, and what teachers can do to help

Stuart Mills, an Information Officer at the Down's Syndrome Association, writes "Hearing loss is common in children who have Down’s syndrome, due to increased incidence of chronic ear diseases, differences in the structure of the ear and weaker immune systems. 

It is possible that teachers may have a child in their class who has Down’s syndrome with hearing loss that has not been picked up. Possible signs of hearing loss in children with Down’s syndrome are difficulties with balance, poking and rubbing ears frequently, lack of response when their name is called and gets upset by loud noises.

Find out more information.

Confused about the move from a statement to an EHC Plan? 

Special educational needs (SEN) helpline experts, Contact a Family, have seen an increase in calls from parents asking about the move from a statement of special educational needs to the newer Education, Health and Care (EHC) plans in England. 

Although the law came into place in England on 1 September 2014, children with statements of special educational needs will be assessed for an EHC plan at different stages depending on where they live and their age.

Find out more information

All you need to know about the Special Educational Needs reforms

Contact a Family have published a useful overview of the special educational needs reforms (in anticipation of the new school year). This includes information on the Education, Health and Care plan, a local offer and creating a personal budget.  

Find out more information


Helping Children with Cerebral Palsy

Cerebral palsy is a disability caused by brain damage that restricts normal movement and coordination. Each year, 10,000 children in the U.S. are diagnosed with cerebral palsy. Cerebral Palsy Guide are a national organization that helps families and individuals affected by cerebral palsy. They provide free educational materials, financial options and support to help those across the country affected by cerebral palsy. 

Find out more information

adult placement

Ouseburn farm Adult Placements

Through their informal adult placement courses, Ouseburn farm offers a safe and relaxing environment with many opportunities for people to develop meaningful skills, that support their vocational, health and well-being and recreational needs

Adults with learning disabilities who are supported by personal budgets are able to choose from a selection of farm related courses including, growing, catering and animal projects as well as creative training subjects.

Find out more information 


childcare for families with disabled children

Legal resource will prevent families missing out on early years education

A new resource has been produced to help parents access free childcare for children with disabilities aged between two and four years old. The guide, developed by legal experts Irwin Mitchell, Monckton Chambers and the charities Every Disabled Child Matters and the Family and Childcare Trust, will make it easier for parents to understand their rights around the government's free early education offer. It will also help them challenge decisions made by local authorities and childcare providers that result in their child being denied access to free childcare. 

Find out more information 

The Department of Education answers Top 10 questions on the changes in SEN and disability education

Special Needs Jungle blog asked parents to send questions about their experiences of the new SEND system for The Department of Education (DoE).

These questions were compiled in to 10 themes. The first theme, 'SEN support', asked "There is still confusion about how to access specialist support in mainstream (schools). How can you help them with this?", to which the DoE responded saying, "The new SEN support system takes the form of a four-part cycle known as the graduated approach.  For children with a specific learning difficulty or dyslexia, there should be a cycle of assessment, planning, doing and reviewing."

Find out more information

Excel

Excel Learning program targets learning difficulties

Excel Strategic Learning Centre, pursues the goal of helping both children and adults overcome an array of learning difficulties through programs in neuroplasticity.

The programs can range from something as simple as identifying shapes and colours, to following patterns and instructions. Each training program includes support through the process of regular progress reports, recommendations for schools and teachers, and parental support.  

Find out more information

Lord Blunkett

Children are missing out on play opportunities vital to their development

A new report by Sense reveals the severe restrictions facing children with disabilities in accessing play. The report identifies failings at every level that result in children with disabilities missing out on play opportunities that are vital to their emotional, social and physical  development. A lack of attention by government, insufficient funding at a local level and negative attitudes towards children with disabilities and their families are all barriers highlighted in the report. 

Download the report > 





If you can recommend any information about people with learning disabilities that would be useful to others, please let us know at

 

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Family Carers Network
National Family Carer Network launches new website 

The National Family Carer Network, a registered charity which links groups and families that support people with a learning disability together, has developed a new website. The new website aims to promote the voice and rights of family carers supporting a person with a learning disability. It contains useful resources and news on events and training, along with a 'voice of family carers' page.

Go to the website 


HFT Family Carer Support

HFT offer support to those who have friends or relatives with learning disabilities. They provide one-to-one support by phone, email and letter and run regular workshops for family carers. They have also developed a huge range of family carer focused resources available to download for free form their website.

Go to the website 

 

Karen's Page

Karen died of cancer in April 2013 when she was only 44. This was the tragic ending to three years of distress and worry after Karen, who had a learning disability  was moved from home following an assessment of capacity under the Mental Capacity Act 2005. Karen's former carer set up a website called 'Karen's Page' to inform families of people with learning difficulties what problems they may encounter and help to prevent a similar tragedy happening to them. 

Go to the website 

New guidance improves support for parents with learning disabilities

Updated advice on how to work with parents who have learning difficulties has been issued by the Working Together with Parents Network (WTPN), led by the University of Bristol.

Nadine Tilbury, Policy Officer for the WTPN based at the Norah Fry Centre for Disability Studies, said, “There was a clear need for an updated version of the Good Practice Guidance, and to press for compliance with its basic principles, so that the human rights of parents with learning disabilities and those of their children are respected. We hope the Department of Health will publish a fuller update in due course, but in the meantime, our interim version will prove helpful for professionals working in the field, and help to ensure parents with learning difficulties, and their children, can access the correct help and support they are entitled to.”

Download the updated guidance >

NHS launches National Framework for Continuing Healthcare and NHS funded nursing care 

NHS England, in conjunction with the Association of Directors of Adult Social Services, has developed a range of useful resources for family carers and those involved in assessment and decision making around NHS Continuing Healthcare.  

Click here for the National framework for Continuing Healthcare 

See the guide for family carers 

Go to the NHS Continuing Healthcare e-learning tool 


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The National Family Carer Network

The Network links groups and organisations that support families that include an adult with a learning disability. Their key objective is to work together to promote better life chances for families that include someone with a learning disability.

Find out more on their website.


New Keys to Life website

To explain ‘The keys to life’, Scotland’s learning disability strategy, the Scottish Government have a website which provides information on how the strategy is being implemented and the progress being made on achieving positive outcomes for people with learning disabilities and their families.   

Go to their website.


Hft Family Carer Support Service

Hft’s national Family Carer Support Service offers free information and support for family carers, including workshops, news and a range of improtant ressources for family carers.

Find out more.

One key resource is their guide to the Mental Capacity Act,  developed specifically for family and friends of people with learning disabilities, so they understand how the Act affects them and those they care about.

Find out more and download the MCA Guide.


The National Family Carer Network and Hft have three information leaflets available to download: The Equality Act 2010: Disabled people and carers; Equality Impact Assessments; and Personalisation - Changes in Social Care: Personalisation and Self Directed Support.




Involving families in best interest care decisions

A leaflet published in April 2012 will support parents who have concerns that they are being excluded from decisions that social care or health professionals are making about their adult son or daughter. These may be decisions about where the person lives, what care they are getting, how they spend their time or medical treatment.
 
Two letter templates help family members who have not been involved, or are concerned that they will not be involved in the best interest decision-making process in the future.
 
Download the leaflet.


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A Day in Our Life

This is a series of mini-films that reveal day to day life being the parent of a child with disabilities or additional needs. The films are designed to raise awareness of the challenges, routines, hopes and joys encountered by parents & carers and raise awareness and understanding amongst professionals and the wider public.

There is also a document to download about parent carer participation, produced by Newcastle City Council.

Find out more.



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Contact a Family

Contact a Family are a UK-wide charity providing advice, information and support to the parents of all disabled children. This includes benefits advice and a special educational needs 'one-stop' service.

Find out more on their website.



The charity’s report, 'Forgotten Families – The impact of isolation on families with disabled children across the UK', published in February 2012, shows that social, emotional and financial isolation is resulting in mental health problems, such as anxiety, depression or breakdown, for nearly three quarters of families with disabled children. 

Download the report.


Tips for dealing with drooling from parents and carers

Excessive drooling can have health and hygiene implications. The skin around the mouth, chin and neck can easily get red and sore, the loss of fluid can lead to dehydration, there may be problems with eating and infections may be more easily transmitted.

Netbuddy have compiled a collection of tips from parents and carers of people who have experienced problems with drooling.

Read the tips 


Mencap - Superhero recipes


This collection of recipes has been selected by Mencap to help you celebrate every day superheroes for Learning Disability Week 2013 - which take place from the 19th - 25th August.

These are highly accessible recipes from some of the finest chefs in the UK and will give you all you need to make a wonderful meal to say thanks to the people that make all the difference in your life.  Most importantly these recipes can be cooked and enjoyed by all the family.

View the recipes on the Mencap website


"This Is My Child", Mumsnet's myth-busting guide

This Is My Child is a myth-busting and awareness-raising campaign, launched in response to requests from our members and supported by input from some of the leading charities in the field.

Its aim is to support parents of children with additional needs, inform everyone else, and open up a conversation about how we can all act to make life easier for everyone caring for children with additional needs.

View the campaign on Mumsnet


The 2014 Holiday Information Guide

This year’s edition has 44 pages and includes sections: Useful advice, General Guides, Tour Operators, Places to stay – UK, Meeting specialist health needs, Places to stay – abroad etc.

The guide can be downloaded from this website



The Rough Guide to Accessible Britain

Available to view for free online, this gives you plenty of new ideas for accessible trips in 2013. Each review contains hints and tips from the Rough Guides team of disabled reviewers who visited each venue, looking for well thought out accessibility features and unique attractions, both of which contribute to making a great day out.

Download the Rough Guide to Accessible Britain


Personalisation for Parents and Carers 

KIDS a charity for children with disabilities, has launched an e-learning package about personalisation for parents and carers. The package, which is based on a handbook produced by the charity earlier this year, provides information about personal budgets and how they will be affected by recent changes to disability benefits. The package can be accessed and accounts created on the KIDS website.

Create an account and access the resource on the KIDS website


Challenging a Bedroom Tax decision


If you are affected you will by now have received a letter from your council telling you about the decision. You have one month from the date of the letter to challenge the decision and Carer's UK have put together a toolkit to help.

Find out more on the Carers UK website


From child to adult: a guide to disability, transition and family finance 


This free booklet has sections for parents and carers and disabled young people, a step-by-step guide to better-off calculations and a list of useful publications, organisations and websites. It answers questions such as: How are family finances affected when a disabled child becomes an adult? When is it most advantageous for a young person to start claiming their own benefits? Can parents change working hours to fit with a disabled young person's new regime?

Download the publication


Taking Risks and Making Mistakes
 


An article published in 'The Voice', the magazine of Down Syndrome New South Wales and Down Syndrome Victoria by Sharon Paley and Mark Wakefield. Sets out the case for parents allowing their children to take some risks.

The article was also used, with additional photographs and a video illustrating the benefits of taking a positive approach, in a blog posting by Hayley Goleniowska at the DownsSideUp blog.

See the blog posting.


The 2012 Holiday Information Guide

This year’s edition has 48 pages and includes sections: Useful advice, General Guides, Tour Operators, Places to stay – UK, Meeting specialist health needs, Places to stay – abroad etc.

The guide can be downloaded here


An Ordinary Life

As part of its project An Ordinary Life, the Foundation for People with Learning Disabilities has launched a free interactive booklet and communication passport to help families transform the quality of life of their child with complex health needs.

Find out more on the FPLD website


 Netbuddy, the online support website
 

Netbuddy has been dubbed “the special needs mumsnet” and recognised with an award from the Media Trust. It offer a range of information, from health advice, such as hospital visits and links to easy-read resources, to tips on behavioural issues, advice on holidays and guidance on family issues. The site, which attracts around 6,000 new visitors a month, also includes downloadable information packs and an “ask-an-expert” forum, with advice from a speech and language therapist, a behavioural support practitioner and other professionals.

Find out more on the Netbuddy website






Just look and cook
Just Look and Cook

Just Look and Cook, a recipe book launched in 2013, is helping to encourage people with learning disabilities to cook and eat healthily. The text free cookbook contains simple, economical & nutritious recipes that are presented to the user through a series of photographs. Each recipe includes a detachable shopping list and uses everyday ingredients and basic kitchen equipment – allowing the user to recreate a great range of delicious dishes no matter how big or small their kitchen. Recipes within the book include firm favourites Spaghetti Bolognese, pizza and chicken curry. 

For more information 


Nhs Fife food

NHS Fife has recipe for success with cookbook for people with learning disabilities

NHS Fife have created a healthy cookbook for kids and adults with learning disabilities. The pictorial catalogue with 30 simple, cost effective and tasty meal ideas has proved such a hit that other health boards want to use it too.  

Find out more information


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Eating well: children and adults with learning disabilities

This is an evidence-based report which summarises available information on the nutritional needs of children, young people and adults with learning disabilities. It also looks at issues around food choice and eating well, and provides practical information to support these groups and those caring for or supporting them.

Download the report 

The Caroline Walker Trust also have a range of education materials, not specially design for use with people with a learning disability but that may be useful in working with people around food and health.


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Obesity, physical activity and food in the West Midlands 

The Department of Health West Midlands, public health and social care teams, West Midlands Public Health Observatory, NHS West Midlands and PAN-WM held a workshop in January 2010  that focused on how to work with people with learning difficulties to maintain a healthy weight, participate in physical activity and make healthy food choices. The event was attended by a range of specialists from the obesity, learning disabilities, physical activity, sport, transport, dance, healthy eating and health sectors. The feedback from the workshop has been used to develop a framework for action and an Obesity Charter launched in January 2012.

Download the Charter
Visit the website

 

Tastier than Porridge 

An initiative of the Swansea Community Chaplaincy Project, the cook book is aimed at individuals who may not be able to access comprehensive cooking facilities; it has been developed as a tool to encourage basic cookery skills and healthy eating.

Download the cookbook


Mencap - Easy read recipes

This collection of recipes has been selected by Mencap to celebrate Learning Disability Week 2013.

These are highly accessible, easy read recipes from some of the finest chefs in the UK and will give you all you need to make a wonderful meal to say thanks to the people that make all the difference in your life.  Most importantly these recipes can be cooked and enjoyed by all the family.

Download the recipes from the Great British Chefs website

Guidance to raise awareness of the importance of good nutritional care

NHS England has published new guidance to help ensure patients receive excellent nutrition and hydration care. 

The guidance has been produced to address the issues raised within ‘Hard Truths’ and the Francis Report; and to the concerns of patient, carers and the public with regard to malnutrition and dehydration.

Malnutrition is still a concern for the health service, affecting more than three million people in the UK at any one time. 

Download the Guidance - Commissioning Excellent Nutrition and Hydration 2015 - 2018  

Cook and Eat easy read recipe books available

Cook and Eat easy read cook books are a range of specially adapted cookery books produced by the South West Yorkshire Partnership NHS Foundation Trust.

People with learning disabilities helped to make the books and have been written so that people with learning disabilities can make more meals with less help. 

The recipes follow a simple structure which includes photographs, easy words, no time limits and an easy method.

Visit the website for more information 


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Good Support


The Social Care Councils (responsible for the regulation and registration of Social Workers and other Social Care Workers) are:


apps

7 of the Best Apps for People with Disabilities

A collection of ground-breaking apps that use modern technology to help people with disabilities around the world. These seven apps use modern technology to enrich the lives of people with disabilities - from creative aids for the blind and deaf to new ways to make life more manageable for people with autism and speech disabilities. 

Apps include Talkit: The app that gives a voice to people with speech disorder, Look at me: The app that improves eye contact and communication and Hear you now: The app that amplifies sounds.

Find out more information.  

How can airports help people with hidden disabilities?

Getting through an airport can be stressful enough at the best of times but for people with 'hidden disabilities' like dementia, autism and hearing loss, it can bring extra challenges. Ryan has autism, his Mum spoke to 'Autism Friendly' about the challenges faced.  

Watch the video >

The Challenging Behaviour Foundation launches resources about children’s experience of restraint

The Challenging Behaviour Foundation has launched a number of resources on the Paving the Way website around the issue of children with learning disabilities being restrained.

A powerful video, ‘Why do they hurt?’ – a 5 minute film about a young boy, Calum, who experienced prone (face-down) restraint at school. Accompanying the video is a family story by Calum’s mother, Beth. which also describes the campaigning work Beth was inspired to undertake in Scotland as a result.

There is also blog post from a family carer, Kate, describing the experiences of her daughter, Laura, and arguing for the importance of effective guidelines and training for those supporting children with learning disabilities. 

Find out more information. 

Going into hospital with a learning disability

Going into hospital is a worrying time for any of us. It can be even harder for someone who has a learning disability. If you're looking after an adult or child with a learning disability, follow these tips to make a hospital stay go smoothly. This includes health communication passports, to help hospital staff know about a person's individual needs.

Find out more information. 

Nothing Down About It: A mother's blog on her child with Down's Syndrome

When Oakley found out her newborn son, Welles, had Down syndrome, she was overwhelmed by the news. She struggled for the first month, unsure how to raise a child with Down syndrome. But as her son grew, Oakley's strength, positivity, and pure love for her son compelled her to become an advocate for him through her blog "Nothing Down About It.

Read her blog >

A special child in the family: Living with your sick or disabled child

This free online book is for anyone whose child is sick or disabled or has other special needs. Written by a parent for parents, it talks about feelings and how to cope with them. It looks at ways to balance the needs of your family, your special child and yourself, and it gives you parent-sized solutions you can use yourself to make life better. In addition to showing you how to find and use the help that's available, it provides tips on making a fuss when that help isn't as good as it should be. And it tackles the big taboos that no one usually talks about, like death and failing to cope.  

Find out more information. 

How charities can improve by adopting co-op principles

There has always been a gulf between the co-operative movement and charitable work – but now a care sector charity has drawn on mutual ideas to pioneer a governance model giving greater control to people using its services.

The new model, created by Learning Disability England, could revolutionise the way charities are run and bring them closer to co-operativism, by incorporating the voices of its service users, their family and friends and other interested groups, says this article in Co-Operative News. Some of the co-op principles include education, training and information, concern for community and autonomy and independence. 

Find out more information. 

People with Down's syndrome answer uncomfortable questions

  • Can adults with Down's syndrome live on their own?
  • Can they have a job?
  • Can they drive?
  • Can children with Down's syndrome learn to read or ride a bike?

These are some of the difficult questions on the minds of prospective parents who have just been told their unborn child will likely have Down's syndrome. The Canadian Down's Syndrome Society searched the most asked questions online about Down's syndrome and launched a new campaign to answer them. The questions are answered in 40 unscripted YouTube videos featuring adults and children with Down's syndrome. 

Find out more information > 


Introduction of Travel Support Card

London Midland has introduced a travel support card to make it easier for some passengers to get assistance from their staff. Anyone who finds travelling difficult can carry a Travel Support Card, which was bought into being after requests from self advocacy groups Speakers Corner and Speak Easy. 

Find out more information.

Virtu Assist

VirtuAssist: The virtual assistant for learning and working

VirtuAssist guides users with learning disabilities on how to operate complex equipment and conduct tasks efficiently in learning and working environments while keeping their hands free.

VirtuAssist's services are provided through two tools: a website for supervisors/trainers/family and a smart glass application to present the step-by-step guides in a fun, hand-free and adapted way to the users.  

Find out more information.

NHS England Board Meeting, update paper on Transforming Care

The purpose of this paper is to inform the Board on 28 July of the progress made to transform care for people with a learning disability and/or autism.

Download the paper >  

View the agenda and board papers >

Transforming Care Partnerships tasked with designing new high quality services

Local plans to transform care for people with a learning disability and/or autism have been published, backed by millions of pounds of dedicated funding announced by health and care leaders.  

Download the funding and summary TCP plans >

NHS Standard affirms accessible information for patients with disabilities

People with disabilities will benefit from improved health and care after new requirements, ensuring they receive easily accessible information and support.

The Accessible Information Standard aims to ensure that people who have a disability, impairment or sensory loss are provided with information that they can easily read or understand with support so they can communicate effectively with services. Examples of the types of support that might be required include large print, braille or using a British Sign Language (BSL) interpreter.

Find out more information. 

Beyond Words picture story App launched 

Beyond Words has gone mobile and created a new app to enrich the lives of people with learning disabilities. The BW Story App holds over 400 short picture stories and 1800+ pictures from across an entire back catalogue. The app is designed to help people access better care and support, empower and inform, help people communicate, increase confidence and share stories.

Find out more information. 


ARC England - FREE Helping Each Other Training Materials

Helping Each Other was a three year project, funded by Comic Relief. The innovative project trained 12 young people with learning disabilities who have experienced sexual exploitation, to become peer trainers, and supported them to deliver awareness sessions to 200 other young people with learning disabilities.

They were also supported to make presentations at conferences and workshops, and to groups of professionals. As part of the project, materials were developed that can be used independently to raise awareness about sexual exploitation with more young people with learning disabilities.

These can be downloaded here > 

Guidance launched to prevent deaths in healthcare settings

Nurses and healthcare workers have been issued with new guidance on caring for people with learning disabilities. The toolkit provides advice on health issues ranging from how to take someone's temperature to how to resuscitate them.

It has been drawn up by Turning Point with the aim of helping services improve the physical health of people with learning disabilities and their quality of life.

The guidance highlights early warning signs to enable workers to support people to access their GP earlier. This will help to avoid hospital admissions, escalation of health issues and support individuals to be as healthy as possible. 

Find out more information. 

Calling all makers, hackers and users: help create the world’s first open source wheelchair

Across the globe, millions of people who need wheelchairs don’t have one or don’t have one that’s suitable for their needs. Hack On Wheels is building an online community to fix this problem by creating open source designs focused on the needs of users. They believe that anyone who needs a wheelchair should be able to access one that is fully customized to their individual needs. They believe that digital fabrication, open hardware and the maker movement can change this.  

Find out more information. 

Leka: Special smart robot for special needs children

Leka is an educational robot that helps children with special needs to develop social, motor and cognitive skills through games and interaction.

Leka is designed to do the same thing every single time to give the user a sense of safety and stability, but still manages to keep the child's attention and provide entertainment with its fun and educational activities. Games include hide and seek, picture bingo and memory games.  

Find out more >  

Watch the video >


Sense launches new service to help with benefit application forms

Sense has launched a new service to assist deafblind individuals and their families and carers, with queries that they have in relation to the completion of benefit claim forms.

The service, which has been developed specifically for individuals with multi-sensory impairments and complex needs, will offer tailored support and assistance in relation to queries that arise whilst individuals and their supporters are completing applications for benefits such as Personal Independence Payment, Attendance Allowance and Employment and Support Allowance.  

Find out more information. 

Supporting adults to have a hearing test – tips for carers

Dr Lynzee McShea, Senior Clinical Scientist Audiology, finds it very helpful when a carer supports a person to attend an appointment and brings information that can help complete the assessment.

She writes, "It helps if the carer can think about their own conversations with the person attending the appointment. Do you use gestures to communicate with that person? Do they respond better if they can see your face? Hearing is more complex than it first appears, and can sometimes be difficult to spot without these observations."

More tips for carers >


How to write a model letter

The Independent Parental Special Education Advice have devised model letters for 7 situations where you may need to write to your local authority.

They are: To request an Education, Health and Care needs assessment; To request a re-assessment; To respond to the draft EHC plan sent by the LA; Objecting to the amendments the LA is proposing to an existing EHC plan; Asking for an early review of an EHC plan; Complaining when the special educational provision on the EHC plan is not being made; Complaining when an EHC needs assessment is not being carried out properly and Complaining when the LA has not completed the annual review of an Education and Health Plan. 

Find out more information  

Nearly two million patients to receive person-centred support to manage their own care

NHS England has agreed a deal which will grant nearly two million people access to more person-centred care as part of its developing Self Care programme. Local NHS organisations and their partners are being invited to apply for free access to patient activation licences, which will help them assess and build their patients’ knowledge, skills and confidence, empowering people to make decisions about their own health and care.

The Patient Activation Measure (PAM) is a validated tool which captures the extent to which people feel engaged and confident in taking care of their health and wellbeing. By measuring people’s activation levels through PAM, organisations can ‘meet people where they are’ and tailor support and services to the individual’s needs. 

Find out more information 


Expert tips on how to improve your best interests assessor reports

For best interests assessors (BIAs), being able to thoroughly explain and evidence their conclusions about whether someone is being deprived of their liberty in their best interests is vital because their report might be used in court. Community Care Inform Adult’s new guide to report writing for best interests assessors is full of advice. 'Be aware of your audience' and 'record everything' are a few of the guide’s tips to help BIAs polish their reports.

More in Community Care >

'Deciding right app' for professionals to aid in making care decisions in advance

The NHS Deciding right app which is part of the Deciding right programme in the north east, Cumbria and London. The app is a guide to support any health or social care professional through the process of making care decisions in advance for people who will or may lose capacity in the future, who have already lost capacity for those decisions or never had capacity.

The app has now been extensively revised and updated throughout and includes new sections on Deprivation of Liberty Safeguards and withdrawing life sustaining devices.

Find out more information 

Disabled Children: A Legal Handbook 2nd edition

Disabled children: a legal handbook is an authoritative yet accessible guide to the legal rights of disabled children and their families in England and Wales. The authors expertly navigate the many, often overlapping, sources of law, explaining the difference between what public bodies must do to support disabled children and that which they may do. 

Each chapter has been adapted into a PDF for you to download for free here >

The fight for respite

“It's hard to quantify just how important short breaks are to us. They are a lifeline. Our son is entirely dependent upon us for all his needs and it is relentless. We had respite provision up until October last year and when I heard we had lost it – due to the changing needs of our son – I cried.

Respite is our safety valve. Without it my nerves shred. It allows us to breathe out and gives us time to relax, away from the constant worry of ‘Is he OK?’ and ‘Will he not be OK in a minute?’

Article in SEN Magazine >

Launch of IAPT Positive Practice Guide 

The Foundation for People with Learning Disabilities (FPLD), in partnership with National IAPT- NHS England, is launching the 'Positive Practice Guide for Learning Disability'.

It provides useful information regarding how best to support people with learning disabilities to access their local IAPT service, including numerous practical examples of how to make reasonable adjustments to achieve this.

Download the Practice Guide. 

Guide to help schools promote equality

Equality: Making It Happen can help schools address prejudice, reduce bullying and promote equality holistically. Succinct reference cards, covering all equality strands and aspects of school life, offer key information, practical advice and suggested activities, examples of good practice, equality monitoring tools and sources of further information and support.  More >

'All parts of the system should work together to improve commissioning', says Voluntary Organisations Disability Group

Speaking on the launch of a new report, 'Together we can deliver more effective commissioning and de-commissioning for people with learning disabilities and autism', VODG chief executive, Dr Rhidian

Hughes, said, "For too long the barriers preventing de-commissioning of inappropriate learning disability and autism services have been left unchanged and unchallenged. 

Download the report.

CQC to inspect services less often due to cuts in funding over next few years 

The Care Quality Commission plans to inspect adult social care services less often and concentrate on providers of greatest risk ahead of an anticipated cut in its budget.

In a draft strategy for 2016-21 released this week for consultation, the CQC proposed a “risk-based” approach where it would focus on inspecting services deemed to be more of a risk to the public, based on better intelligence gathering about service quality.

More information.

Download the CQC’s draft strategy 2016 to 2021 - Shaping the future: consultation document.


Celebrating independence

Jenny Bennett has released her own book, “From long stay hospital to nightclub”, published by Changing Our Lives. 

The book charts Jenny’s life, which began with 19 years living in institutions ranging from a children’s home, a long stay hospital and a short stay in an assessment and treatment unit, to her life now, night clubbing, living in her own home, choosing her own staff, taking risks and loving her independence.  
Read Jenny's book >

New movement puts respect at the heart of accessible tourism

Tourism is for Everybody encourages individuals, businesses & policy makers to pull together to deliver a warmer welcome for ALL visitors, including those with some form of impairment.

Chairman Tim Gardiner explains “It’s not just about legislation and infrastructure, it’s about awareness and respect. A little effort from tourism professionals can make a massive difference.” Free Tourism is for Everybody toolkits are available for businesses and the website includes a helpful section for people looking for advice on stress free travelling.  

Find out more information

How women with learning difficulties cope with their periods

In UK primary schools, teachers give period lessons where students are given tampons, sanitary towels and a small lecture about why and when girls bleed, and what to do about it. The lesson is a bit different for girls with learning difficulties.

For example, it's not just a one-off lesson but often a big part of the girls' education. Carers and teachers often write stories or draw pictures to describe the process. This example, posted on The Women’s International Perspective, outlines the way one girl, Katie, with autism started to learn about periods – through a story written by her teacher.  

Find out more

Safe and Secure

Ensure your loved one has a safe and secure future

‘Safe and Secure', a book produced by Thera Trust, gives step-by-step advice to ensure people have a safe and secure future surrounded by people who care about them when family, friends and carers are not around. The book intends to allay fears and address various hoops people with special needs may encounter in their lifetime.  

Find out more information on the website. 

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Care Quality Commission

The job of the Care Quality Commission (CQC) is to check whether hospitals, care homes and care services are meeting government standards. You can see reports on inspections of care homes and hospitals on their website. They also protect the interests of vulnerable people, including those whose rights are restricted under the Mental Health Act.

Find out more on the CQC website.

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Social Care Institute of Excellence (SCIE)

The SCIE website has lots of information and reports of use to people providing support to people with learning disabilities.

Find out more on the SCIE website.




Social Care TV

Social Care TV is an online service commissioned and produced by SCIE for everyone involved in social care and social work.

You can watch the videos online or download them for use in presentations or training events. All videos include supporting material and related information to help you put what you see into practice.

Find out more and watch some videos on the Social Care TV website.


Find Me Good Care

The Social Care Institute for Excellence (SCIE) is developing a website that will help people to make choices about care. FindMeGoodCare.co.uk will cover all types of care and support for adults including regulated and unregulated services in England. It will provide links to specialist websites (including local services, specialist and independent financial advisers). The site will go live summer 2012 and will provide information about services for all adults.

You can register your interest on the Find Me Good Care website prior to launch.


Personal assistant help

Reducing the confusion around employing a personal assistant

The tax implications of employing a PA are significant. A new guide seeks to help direct payment users to manage them, says Colin Bruce. The article covers uncertainty on areas including type of employment, real time information, workplace pensions and national minimum wage.  

Find out more on the Community Care website.

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Involving families in workforce development

‘Good practice in involving families in your workforce development' was a project to identify good practice of involving family carers of people with a learning disability in workforce development.

A report collating seven examples from local authorities, health, training and support providers and identifying common principles of good practice is now available to download.

It details how involving families in workforce development can support organisations achieve CQC outcomes, and can help organisations have a healthier, more committed and involved workforce, save money and develop supportive relationships with families built on trust.

Download a copy of the report.

 

Organisations that can help if you have to make a complaint:

Independent Complaints Advocacy Service (ICAS) provides independent support to people wishing to complain about treatment in the NHS. Three providers deliver ICAS in different parts of the country:


The Parliamentary and Health Ombudsman carries out independent investigations into complaints about UK government departments and the NHS in England in order to help improve public services:  www.ombudsman.org.uk

For more information on making a complaint to the regulators in England, Wales, Scotland and Northern Ireland go to:



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Raising a concern with CQC

A Care Quality Commission leaflet about what to do if you have concerns about what is happening where you work. When the concern feels serious because it might affect patients or people receiving care, colleagues or your whole organisation, it can be difficult to know what to do. This leafet sets out the steps you should take.

Find out more on the CQC website.


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The Whistleblowing Helpline

The whistle-blowing helpline for NHS staff and staff and employers in the social care sector.  The helpline service is free, independent and confidential.

The helpline number is 08000 724 725 and operates on weekdays between 08.00 and 18.00 with an out-of-hours answering service available at weekends and on public holidays. A web-based service is also being developed.

You can contact the helpline if you have concerns but are unsure how to raise them or simply want advice on best practice.

Find out more on the Whisleblowing Helpline website



The core principles: Ensuring quality services

As part of their new strategy the Winterbourne View Joint Improvement Programme has published a new document: "Ensuring quality services: core principles for the commissioning of services for children, young people, adults and older people with learning disabilities and/or autism who display or are at risk of displaying behaviour that challenges."

Download the full document

Download the Easy Read version of the document


 PCPLD Network 


The Palliative Care for People with Learning Disabilities Network website is a reciprocal way of sharing information. The aim is to  promote excellence and networking in end of life care for people with learning disabilities.

The website is for anyone who is interested in promoting excellent palliative and end of life care for people with learning disabilities. Members are mostly professionals, but also include some (family) carers, and some people with learning disabilities.

Visit the PCPLD Network website


New guide to help people exercise their freedom


Written by Dr Simon Duffy, Freedom, published by the Centre for Welfare Reform, offers practical advice on how to offer support while enabling people with learning disabilities to exercise freedom of choice as much as possible.

View the guide online 


Management Induction Standards


The Skills for Care adult social care Manager Induction Standards (MIS) set out clearly what a new manager needs to know and understand.

They are aimed at those new to management as well as those new in post who have previously managed other care services. They are also intended for aspiring or potential managers to help support their development, although evidence of having met some of the standards will require actual management experience.

The standards can to be used in a wide range of settings, including people who manage their own services and micro-employers, as well as small, medium and large organisations across the public, private and voluntary sectors.

Download the new standards from the Skills for Care website





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Government


All UK legislation can be downloaded from
www.legislation.gov.uk

You can find policies and reports for the nations of the UK at:


There is a full listing of all Government departments on the DirectGov website. 

The Equality Act 2010: the impact on disabled people

The House of Lords Select Committee Report on the 'Equality Act 2010: the impact on disabled people' has been published. The Select Committee took evidence in 2015 from over 140 people with disabilities, family members, politicians and a wide range of organisations. The committee's report has resulted in five critical conclusions.

Download the report >

Download the Easy Read version of the report >

The Equality Act, making equality real

Download the Easy Read guide to the Equality Act.

Voting in the EU referendum 

The Brandon Trust has produced a video guide to the EU referendum to encourage everybody to take the opportunity to vote. People who receive support from Brandon asked for more information about the debate and voting, so our Involvement team set to work on making an accessible film, aiming to outline the key arguments and the process from joining the voting register, to putting a cross in the box.

The language used when discussing referendums is rarely accessible so in the video, Beth Richards, Brandon’s Involvement Assistant, explains the important terms.  

Watch the video here >

Voting in the EU Referendum: Easy Read

An easy read version of voting in the EU referendum is now available. "A referendum is a single vote on a special issue. A referendum is held sometimes to help the government make a very important decision. They ask a question and you vote for the answer you agree with. The question is: “Should the United Kingdom remain a member of the European Union or leave the European Union?”  

Find out more information. 


Brexit report highlights ‘concerns and opportunities’ for people with disabilities

A report setting out both the 'concerns and opportunities' for people with disabilities in the aftermath of Brexit has been released by leading disability charity Papworth Trust.

The 64-page document, entitled ‘Brexit – What next for disabled people?’, aims to raise awareness of the various issues coming out of the UK’s decision to leave the European Union in June. Social care, accessible housing, welfare and education are all debated with the charity calling on the Department for Exiting the European Union to work closely with voluntary sector representatives to consider the wider implications for disabled people.  

Download the report >


Ours to own: Your human rights

A booklet about human rights and what they mean for you.

Download the Easy Read Guide to the Human Right Act.

The Office for Disability Issues (ODI)

The Office for Disability Issues (ODI) leads the government’s vision of achieving equality for disabled people. They are a cross-government organisation that works with government departments, disabled people and a wide range of external groups.

Find out more about their work, and a wide range of information and resources, on their website.


Deprivation of Liberty Safeguards Factsheet

Age UK has produced a factsheet that looks at the Deprivation of Liberty Safeguards (DoLS), which relates to people who are placed in care homes or hospitals for their care or treatment. This factsheet covers: what deprivation of liberty means; the required procedure for authorising a potential deprivation of liberty; what you can do if you are concerned that someone is being unlawfully deprived of their liberty; and the required procedures and protections available once someone has been deprived of their liberty. 

Download the factsheet 

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NHS develops an Information Standard for accessible information 

The NHS have developed an Information Standard for accessible information. This guidance will tell organisations how they should ensure that patients with disabilities and carers receive information in formats that they can understand.

Go to their website 


Guidance to protect people with learning disabilities from forced marriage

This guidance, from the Government's Forced Marriage Unit, was developed in conjunction with learning disability charities the Ann Craft Trust and the Judith Trust. Research carried out by the charities suggests that people with learning disabilities are at risk of being forced into marriage, and are less likely to report the abuse.

Each year, the Forced Marriage Unit deals with over 1600 reports of forced marriage. Since August 2009, at least 58 cases have involved people with learning disabilities.

For more details about the Forced Marriage Unit and to download a copy of the Multi-Agency Practice Guidelines go to their website.

This guidance builds on the easy-read booklet aimed at people with learning disabilities ‘Am I being forced to marry?’ available at www.forcedtomarry.com published by the charity Respond and the Forced Marriage Unit.


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The Equality Act 2010 - What do I need to know?

 

This Disability Quick Start Guide - produced by the Government Equalities Office - tells you how the Equality Act 2010 changes how you have to act in order to prevent and address disability discrimination and disability-related harassment when you provide goods, facilities and services to the public, for example as a residential care home, community shop or after-school club.

Download the guide.


SEN: Preparing for the Future


Fair treatment for children with Special Educational Needs (SEN) is being called for by the Local Government Ombudsman (LGO) in a new report. The report, SEN: Preparing for the Future, urges that children with SEN, and their families, must be treated fairly and receive the support to which they are entitled. It highlights a number of stories where pupils are being unlawfully excluded from school and being denied specialist support. 

Download a full copy of the report 



What councils need to know about people with learning disabilities

‘What Councils Need to Know about People with Learning Disabilities', the first Local Government Knowledge Navigator Evidence Review, is available to download now.
The new ‘Need to Know' review series will provide local government with accessible, relevant and reliable knowledge, coupled with the necessary ‘navigation' aids to route people to what is available to meet these requirements.

Download the "Need to Know" review 



Strategic role for the CDC

The Council for Disabled Children have been appointed as SEN and disability Strategic Reform Partner to the Department for Education. They will be developing information highlighting key aspects of the reform process in order to support the engagement of a broad range of stakeholders.

Read more in the CDC's newsletter


The impact of cuts to the DLA

A graphic illustration produced by United Response, showing very clearly how cuts will affect people with disabilities and their families.

View the graphic illustration on the United Response website


How Parliament Works

Three easy-read guides provide short introductions to what parliament does:

“How Laws are Made” explains how the Houses of Parliament make laws, including the readings, committee and report stages in the House of Commons and House of Lords.

“You and Your MP” explains what MPs can and can’t do for their constituents and how MSPs, Assembly Members and MLAs can help in Scotland, Wales and Northern Ireland.

Finally, “About Select Committees” explains the role of these small groups of MPs or Peers in looking closely at the government’s work and anything else that parliament decides needs addressing.

Download the easy-read guides





 

Smile! Stop Hate Crime

Smile! Stop Hate Crime, a project run by Nottingham Mencap, has created an interactive and fun learning pack to help people with learning disabilities to keep safe in the community. The pack contains a DVD with resources, clips and a printed guide designed  to help support the running of sessions on disability hate crime and keeping safe: at home, on the street, when using transport and most importantly of all with other people.

For a copy of the DVD go to their website.

'Government Hate Crime Action Plan does not go far enough to protect people'

The government hate crime action plan represents a positive step forward but does not go far enough to tackle hate crime perpetrated against those with a learning disability, the chief executive of a service provider has said.

The Action Plan, will commit the government to work to give young people and teachers the tools they need to tackle hatred and prejudice, including through a new programme to equip teachers to facilitate conversations around international events and the impact they have on communities here in the UK.

Download the action plan >

Find out more information. 

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Disability Hate Crime Reporting Book

Home office easy read booklet about reporting disability hate crime.

Open it or download it.

There is also a reporting form to use of you are the victim of disability hate crime.

Open it or download it.



Challenging the media and staying safe online

The Foundation for People with Learning Disabilities are calling for a change to the language used about people with learning disabilities and the way they are represented in the media, in order to tackle the increase in bullying, harassment and hate crime. They have produced two guides to provide tips and advice to help people with learning disabilities stay safe, Staying Safe on Social Media and Staying Safe Out and About. The Foundation has also developed a guide for broadcasters to help them improve how they represent people with learning disabilities in the media. 

Find out more



Guides to help stop disability hate crime

Disability hate crime guidance documents launched in February 2012 to raise awareness of disability-related harassment and hate crime and how to report it.

The guides are part of a joint project between the Office for Disability Issues and Disability Rights UK.

The guidance documents are available here



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Hidden in Plain Sight

Equality and Human Rights Commission report published in September 2011, of a formal Inquiry into the actions of public authorities to eliminate disability-related harassment and its causes.

Read about the Inquiry and the report on their website.

 

 

Crown Prosecution Service guidance on Hate Crime

The Crown Prosecution have produced a leaflet introducing the CPS policy for prosecuting cases of disability hate crime, there is an easy read version. They also have a policy statement explaining the way that the Crown Prosecution Service deals with cases of disability hate crime and guidance for prosecutors when dealing with such cases.

These documents are all available on their website.

 

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Mencap's 'Stand by Me' campaign 

14 police services across England took part in research into how police respond to disability hate crime. This was carried out by The Office for Public Management (OPM).  We found that although some police forces had good policies for tackling hate crime against a person with a learning disability, others needed to improve.

View the Mencap web page where you can download the report and an easy read version.

 

May 2013: Disability Hate Crime Guide


Until, the majority of these crimes are reported there will never be a true picture of the prevalence of disability hate crime in this country and nothing will change says Disability Rights UK, who have published Let’s Stop Disability Hate Crime A guide for disabled people.

Download the guide from the Disability Rights UK website 




 

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Me at Mealtimes

Me at Mealtimes, an easy read booklet written by specialist speech and language therapist Susan Guthrie, has been designed to help make eating more enjoyable and fun for those who find mealtimes difficult. The book encourages people to score their mealtimes using the Me at Mealtimes scorecard and provides advice on who to contact for help with eating, drinking or swallowing problems.

Download Me at Mealtimes

Cervical screening (smear tests) save lives – let’s talk about it!

Women with a learning disability are far less likely to take the test than most women. This might be because some carers, parents or health professionals do not think women with a learning disability need one or because they do not know that they are sexually active. They may also be too embarrassed to talk about it and not know enough about the test.

Women 25 and over are invited to cervical screening. All women, whether they are in a relationship and having sex or not, should attend.

Attending a smear test when invited can save people's lives. Women with learning disabilities should be supported to make this happen.

Find out more information: http://bit.ly/2jsgDCZ

Having a smear test - What is it about? Download the easy read version: http://bit.ly/2jU2bXJ

NHS easy guide to cervical screening. Download: http://bit.ly/2jsmzMr

The Smear Test Film. Watch the video: http://bit.ly/2j9aGtT


The flu jab for people with learning disabilities

NHS England are offering free flu jabs for individuals with a learning disability.  Watch Camilla, who has a learning disability, get her flu jab, here >


Flu resources

Here are materials, specifically learning disabilities focussed:

Easy Read flu leaflet: ‘All about flu and how to stop getting it’

Easy Read childhood nasal flu leaflet

Audio version of the campaign leaflet

ER version of the campaign leaflet (professional print ready and web accessible)

British sign language leaflet  

A short video has been produced to play in waiting rooms. Watch the video >


Easy read resources on cancer available 

Macmillan Cancer Support have a range of easy read resources about cancer for people with learning disabilities on their website. The resources, produced by CHANGE, include information on 'what is cancer', 'signs of cancer', 'screening for cancer', 'cancer types' and 'tests for cancer'.  

Find out more information.


Learning disabilities: identifying and managing mental health problems quality standard by NICE

This quality standard, by NICE, covers the prevention, assessment and management of mental health problems in people with learning disabilities in all settings. It describes high-quality care in priority areas for improvement

Download >

Good clinical practices important to treat Alzheimer’s in people with Down's syndrome

More research is essential to improve protocols for diagnosing Alzheimer’s disease in people with Down's syndrome, but the ability to identify and care for those patients is enhanced significantly if clinicians are aware of specific circumstances and use a multi-disciplinary treatment strategy. Those findings are included in a study titled 'Challenges faced in managing dementia in Alzheimer’s disease in patients with Down syndrome'. The study highlights the need for more research on managing Alzheimer’s disease in this group of patients, as very few robust clinical studies are available. However, it emphasizes that quality care for people with both Down's syndrome and Alzheimer’s is possible if good clinical practice guidelines are followed. In this study, scientists from the Birmingham Learning Disability Service at Birmingham Community Healthcare NHS Foundation Trust in the U.K. placed the spotlight on the particular issues that physicians and caretakers should taken into account when managing Alzheimer’s dementia in people with Down.  

Find out more information.

In partnership with Alzheimer’s Society, BILD have two Easy Read factsheets on dementia for people with learning disabilities.

My Future and End of Life Care Plan

This is a plan put together by St Luke's Hospice with Plymouth People First Self Advocacy group to help people to talk about their future and end of life care choices and includes sensitive issues such as funeral planning and organ donation. 

Download the plan. 

Download guidance for support staff. 

Download feedback form. 

An Easy Read Guide: 'I Have Fragile X Syndrome'

The Fragile X Society have produced a new easy-read publication, 'I Have Fragile X Syndrome, produced for individuals with fragile X. The publication looks at various aspects of fragile X, giving and overview of its characteristics. It also includes some practical strategies for managing anxiety, making friends, meeting people, and learning.

Their family support workers worked to ensure that this booklet is accessible to everyone. They partnered with Change People (an inclusive organisation creating opportunities for individuals with learning disabilities) to produce bespoke pictures and symbols.  

Find out more information. 

Humber NHS Foundation Trust trials 'My Health Guide' app

Two hundred people with learning disabilities have become the first in the UK to trial a new app aimed at improving their quality of life. 'My Health Guide' allows people to capture video, record voice messages and show photographs of their lives and the people important to them alongside vital information about their healthcare. Humber NHS Foundation Trust has become the first in the country to introduce the app so people with mild to moderate learning disabilities communicate more effectively with care teams.

Find out more information. 

Health and Care of People with Learning Disabilities: Experimental Statistics: 2014 to 2015

People with learning disabilities have poorer health and shorter life expectancy than those without shows the largest dataset of its kind, published by NHS Digital. And the proportion given an annual health check varies considerably, depending on age and GP practice location. The preliminary report, which includes data from almost half of all GP practices in England in 2014-15, represents 51% of all patients registered, including 127,351 people with a learning disability and 28,832,342 people without. This makes it the largest study ever conducted into the health of people with learning disabilities in England.  

Download the report >

Health needs of people with learning disabilities: issues and solutions

Many people with learning disabilities are not getting their annual health check, facing increased risk factors to a number of diseases as a result. This article, written by Consultant Nurse Learning (Intellectual) Disabilities Jim Blair and published in in The British Journal of Family Medicine, considers what more can be done to help those most at risk.

Find out more information


Practice guidelines for psychotropic drug prescribing 

The Faculty of Psychiatry of Intellectual Disability, part of The Royal College of Psychiatrists, has published practice guidelines for psychotropic drug prescribing for people with intellectual disability, mental health problems and/or behaviours that challenge. 'Consent-to-treatment procedures (or best-interests decision-making processes) should be followed and documented', was listed as one of the standards for the prescription of a psychotropic drug.

Find out more information

NICE guideline on the transition between inpatient hospital settings and community or care home settings for adults with social care needs

This guideline covers the transition between inpatient hospital settings and community or care homes for adults with social care needs. It aims to improve people's experience of admission to, and discharge from, hospital by better coordination of health and social care services.

Download the NICE guideline   

Easy read leaflet on pneumonia

Pneumonia is an infection that makes the tiny air sacs in your lungs inflamed (swollen and sore). They then fill with liquid. The Foundation for People with Learning Disabilities have funded the production of an easy read leaflet on pneumonia. The guide includes the definition, the symptoms, the diagnosis, the treatment, complications and prevention of pneumonia. 

Download the Learning Disabilities guide on Pneumonia 

Healthier Scotland Conversation

A report has been published about the findings of SCLD’s consultation with people with learning disabilities at four recent events around the Scottish Government's 'Healthier Scotland Conversation'.  

Read the report.

NICE guidelines to prevent overmedication

NICE is recommending that people with a learning disability and behaviour that challenges only receive antipsychotic medication as part of treatment that includes psychosocial interventions.

In its new Quality Standards, QS101 ‘Learning disabilities: challenging behaviour’, NICE warns of the risk of overmedication for people with learning disabilities due to carers having a lack of support from professionals.  

Read the NICE Guidelines in full 



To know or not to know: Being alert – Why it helps to know in advance if your next patient has a learning disability.

Identifying people with learning disabilities, or intellectual disabilities, can be problematic and lead to misinterpretations or varying expectations of a person’s ability, as well as enhancing the possibility of clinical risks.

Setting up a system including alerts, annual health checks and a hospital/health passport (card, video, photographic) will enable professionals to adapt their service in such a way that makes the outcome of the appointment, clinic, procedure etc. likely to enhance the quality of health interactions, diagnosis and outcomes.  

More information is available here 


Personal health budgets have a positive impact on peoples quality of life

The findings of the third personal outcomes evaluation tool of over 500 personal health budget holders and carers have been published by In Control, Lancaster University and Think Local Act Personal. 

Over three quarters of carers said that having a personal health budget had improved day to day stress, the quality of life of the carer, the quality of life of the person, and degree of choice and control the carer has in life.

The findings are available to download here 


Readmission to hospital for people with learning disabilities
A study by the Journal of Intellectual Disability Research, found that complex discharge planning for people with learning disabilities may be lacking, resulting in them being readmitted to hospital for the same issue when this could potentially have been avoided.  

The key findings of the report are available here 

 

Improving support for people with learning disabilities in hospital

Working together 2 is an update of the Working together guide published in 2008 to help hospital staff, family members and paid support staff work jointly towards the end of any hospital admission. The guide highlights how to improve support for people with learning disabilities in hospital and includes practical suggestions along with links to further resources.

The guide is free and available to download here 


Royal College of Nursing easy read leaflets 

The Royal College of Nursing Pain and Palliative Care Forum have created three easy read patient information leaflets which cover Epidurals, Patient Controlled Analgesia and pain after surgery. 

Download:


Special Inquiry into poor discharge from health services by Healthwatch England

Healthwatch England has launched a report on the special inquiry on poor and unsafe discharge, "Safely home: What happens when people leave hospital and care settings?" The report highlights some of the key areas where patients and care users feel like they have been let down. Healthwatch England found that "when discharge goes wrong, it comes at significant cost, both to individuals and to the health and social care system." 

The report can be downloaded here 


Having a smear test - what is it about?

'Having a smear test - what is it about' is a new resource from Jo’s Cervical Cancer Trust about the importance of smear tests. The easy read booklet details who should go to a smear test, what to expect when being examined and how the test protects against certain cancers. The guide was designed to help break down the barriers that prevent women with learning disabilities attending their screening

The guide is free and available to download here 


Be clear on cancer

Be clear on cancer, a campaign run by the NHS, have published an easy read guide to let people know about cancer of the oesophagus and stomach. The booklet is full of helpful advice and helps to inform people what cancer is and who is most at risk of getting it. It also provides information on spotting the signs of cancer; such as having heartburn for over 3 weeks and feeling or being sick or losing weight for no reason. 

The guide is available to download here


Getting the sums right

Getting the sums right - How to sustainably finance personal health budgets is a new briefing paper published by the NHS Confederation this month in partnership with Think Local Act Personal. The 11-page document includes case studies from organisations which have already introduced personal health budgets and sets out how organisations can address financial challenges when implementing them.

Download the briefing paper here 

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Death by Indifference: 74 deaths and counting

This Mencap report, published in February 2012, looks at what progress has been made since the publication of Mencap’s original ‘Death by indifference’ report in 2007.

It confirms that, although some positive steps have been taken in the NHS, many health professionals are still failing to provide adequate care to people with a learning disability.

Download the report from the Mencap website.


NAS creates hospital passport

The National Autistic Society has created a passport to be used in hospital by people with autism who need treatment. The passport is designed to help people with autism to communicate their needs to doctors, nurses and other healthcare professionals. 

Download the hospital passport


Film launched to promote cervical screening for women 

A new resource about cervical screening (smear tests) has been launched following the poor uptake of screening for women with learning disabilities. ‘The Smear Test Film’ is a health education film resource for women eligible for cervical screening who have mild and moderate learning disabilities. It has been made by Public Health England in association with Jo’s Cervical Cancer Trust. 

Watch 'The Smear Test Film'

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The Improving Health and Lives Learning Disabilities Observatory

The Improving Health and Lives Learning Disabilities Observatory keeps watch on the health of people with learning disabilities and the health care they receive. They have a website that provides a lot of information and reports on projects they are involved in.

A key publication you will find there is Estimating Future Need for Social Care among Adults with Learning Disabilities in England: An Update. This is an update to a 2008 publication by Eric Emerson and Chris Hatton of estimates of the need for adult social care support among people with learning disabilities in England. Covers the period 2009-2026.

Find out more on their website.
 
 
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Good health care for all

The booklet from the Foundation for People with Learning Disabilities, provides practical hints and tips for people with learning disabilities, family carers and anyone who supports a person with learning disabilities on how to go about using the NHS, what to expect, real life examples of challenges and how they can be overcome as well as some advice about how to get help and some useful contacts to get more information.

Download it from their website. 



keeping healthy when it is really hot

Beat the Heatwave - stay cool in hot weather

The government produced this easy read guide about how to stay cool during hot weather a couple of years ago but the advice remains helpful. 'Keeping healthy when it is really hot', advises people to avoid alcohol, use sun protection and to stay out of the sun in peak times (from 11am - 4pm) during a heatwave. It also recommends to check on neighbours or older people who may struggle in the heat and never to leave people or animals in a parked car for a long amount of time. 

Download from the Haringey Council website


Live with a Healthy Heart


A DVD and booklet that helps people with learning disabilities to understand about coronary heart disease and its risk factors.

Download from the British Heart Foundation website




Postural care pathway for people with learning disabilities

The Learning Disabilities Elf, a blog which looks at the latest evidence in relation to learning disabilities, has published a blog post about postural support and how it can be critical in reducing pain and discomfort for people who have mobility issues. It includes a range of postural support recources and discusses where postural support in the UK.

The Learning Disabilities Elf



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Congential heart disease information in easy read

Community Futures Kent, part of the Avenues Trust Group, helped create an easy read version of a new ‘Adults living with congenital heart disease’ document from NHS Specialised Services. Mencap and the Down’s Heart Group also helped to check the document. 



NHS Protect

Meeting needs and reducing distress in NHS settings

NHS Protect has launched new guidance on the prevention and management of clinically related challenging behaviour in NHS settings.

The guidance is aimed at clinical staff, managers, trainers, and non-clinical staff. It may also be of interest to patients and service users, their carers and families.

It has been developed to assist staff in preventing and managing clinically related challenging behaviour by minimising a patient’s distress, meeting their needs and delivering high quality personalised care, in an environment that is safe for staff, patients and visitors.

The guidance, training videos and other resources and useful tools can be accessed on a dedicated website 


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Understanding Intellectual Disability and Health

Developed by St George's University of London and edited by Shiela Hollins, this website has a wealth of information about this subject.

Find out more on their website.




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Working together: easy steps to improving how people with a learning disability are supported when in hospital

 

This Hft booklet was put together by a working group of family carers, hospital staff and learning disability nurses and offers useful resources including a Checklist for Admission Meetings. 


The booklet can be downloaded from the Hft wesbite.


The estimated prevalence of visual impairment among people with learning disabilities in the UK by Eric Emerson and Janet Robertson of the Learning Disabilities Observatory

The report, commissioned by RNIB and SeeAbility and published in June 2012, contains estimates of the prevalence of visual impairments among children and adults with learning disabilities in the UK.

Download the report from the IHAL website.



Easy read pneumonia

Easyread leaflet on pneumonia

Pneumonia is an infection that makes the tiny air sacs in your lungs inflamed (swollen and sore). They then fill with liquid. The Foundation for People with Learning Disabilities have funded the production of an easyread leaflet on pneumonia. The guide includes the definition, the symptoms, the diagnosis, the treatment, complications and prevention of pneumonia. 

Download the easyread leaflet on Pneumonia.

Asthma help


Asthma UK have produced a range of free easy to read materials produced in partnership with people with learning disabilities. These materials can be used to talk through the basics of asthma and asthma management. Among the materials are: An easy to read and understand guide to asthma which explains what asthma is, the triggers and treatments and how to look after your asthma, also a guide with four clearly illustrated steps to what to do in an asthma attack.

Find out more on the Asthma UK website


Learning Disabilities and Dementia

The Alzheimer's Society have a factsheet 'Learning Disabilities and Dementia'.

"Advances in medical and social care have led to a significant increase in the life expectancy of people with learning disabilities. Understanding the effects of ageing among this group − including the increased risk of developing dementia - has therefore become increasingly important. This factsheet explains how dementia may be experienced by someone with a learning disability and gives some suggestions for how the person can be supported."

Find out more on their website.

Dementia and people with learning disabilities

This report is the result of a joint working group of the Learning Disability Faculty of the British Psychological Society and the Royal College of Psychiatrists.

The main purpose of the report is to enable those working in clinical and social care services to improve the quality of life of people with learning disabilities who develop dementia, by providing guidance to inform assessment, diagnosis, treatment and support. The guidance is aimed at clinicians in learning disability and older peoples’ mental health services and services for younger people with dementia. 

Download the report. 

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Toolkit to maintain good daily health 

A health toolkit has been launched, developed by a team of nurses, which aims to improve the health and wellbeing of people with learning disabilities. 

It contains information to help people maintain good health on a day-to-day basis.


The toolkit is divided into six sections, the first four being relevant to all workers who want to gain a greater understanding of how to best look after people in care. Later sections focus on particular illnesses or conditions to give support staff a more acute understanding of these problems.  

More information.

Download the health toolkit.

Dec 2013: New standards aim to improve health services for people with sensory loss 


Two new guides have been published that will help front line NHS staff to communicate with people who have a range of different needs, including those who are deaf or hard of hearing, blind or partially sighted or have learning disabilities.

The new All Wales Standards for Accessible Communication and Information for People with Sensory Loss focuses on what people should expect to receive when they access healthcare.

Download the guides


Confidential Inquiry Events - presentations available to download

The CIPOLD team have made the presentations that they used in their recent review meetings available to download to the public.

Download the presentations from their website


Hiblio - health film your way

An excellent health site which includes lots of short videos on pregnancy, birth, babies and toddlers as well as other health issues. The videos aren't specifically made for adults with learning difficulties but they would still be great for sharing with individual mums or parents groups.

Visit their website


Your breasts, your health – supporting people with learning disabilities

This free resource from Breast Cancer Care is designed to help people with learning disabilities be breast aware, with the support of their carer. The pack includes a breast awareness book for people with learning disabilities and an accompanying guide for their carer.

Download the resource or order a hard copy 

Easy Read lung cancer leaflet

The NHS has created an Easy Read version of their Be Clear on Cancer lung cancer leaflet, available to download for free.

Download the Easy Read leaflet


In Control's CCG health programme webinar

In Control co-hosted a webinar with NHS England to introduce the personal health budget delivery programme for clinical commissioning groups (CCGs). A recording of the session, together with a copy of the slides can be downloaded from the In Control website.

Visit the In Control website

Are things getting better for people with learning disabilities?

BILD and Mencap ran a consultation, with the Department of Health, to find out from people with learning disabilities and family carers about their experiences of using the health service and what they think needs to change.
Together we have produced a joint report, called Getting Better?, which reports on the consultation and what people with learning disabilities and family carers said. You can also download the results of the online survey.


Download Getting Better? Full Report

Download Getting Better? Easy Read Summary

Download Getting Better Survey Results

Download Getting Better Easy Read Survey Results

Learning Disability Profiles

Improving Health and Lives' Health Profiles are numbers which help people who plan health services. They try to show:
•    How many people have learning disabilities
•    How healthy they are
•    How much health care they get
•    How well social services are looking out for them
They show how your area compares with others and are used by planners in health services and social services. They are also interesting for self-advocates and family carers.

View IHAL's Health Profiles


Department of Health progress report on healthcare for people with learning disabilities

The Department of Health have published their second report, Six Lives: Progress Report on Healthcare for People with Learning Disabilities which outlines the progress made in delivering the recommendations from the initial Six Lives report, what has been achieved so far and what still remains to be completed.


Download the Six Lives report and the easy read version
 


Government response to the Confidential Inquiry into premature deaths of people with learning disabilities

The Norah Fry Research Centre published their report of the Confidential Inquiry in March 2013 which had been set up and funded by the Department of Health in response to a recommendation in “Healthcare for all “(Michael, 2008 DoH). The Confidential Inquiry report showed that people with learning disabilities have a poor experience of healthcare services and also die very early compared to the general population. The confidential inquiry made 18 recommendations and the Government response outlines what it intends to do to ensure that the identified issues are addressed.

Department of Health: Response to the Confidential Inquiry into learning disability

University of Bristol CIPOLD Report


 
Alternative guide to the NHS in England

Very useful animation explaining the complexity of the NHS, produced by the King's Fund.

Watch the animation


 Alzheimer’s Society 


This site provides access to information on the symptoms and diagnosis of dementia, how to care for people with the condition, and relevant training resources.

It also includes helpful factsheets on, for example, deprivation of liberty safeguards (DoLS), which were drawn up as part of the Mental Capacity Act (2005) to ensure that vulnerable people’s freedoms are not taken away inappropriately. The DoLS apply to vulnerable people aged 18 or over who are unable to make decisions for themselves but who are not detained under the Mental Health Act (1983). As such, the safeguards are likely to affect mainly older people staying in hospitals, residential care homes and residential nursing homes, including people with dementia who are informally admitted to hospitals or care homes, and who do not have the mental capacity or ability to make decisions about their care or treatment.

Find out more on the Alzheimer's Society website


SeeAbility: Easy read eye health information service

This website is an online information service that aims to improve access to eye care information for people with learning disabilities. Eye health charity SeeAbility has a dedicated area called ‘My eye care’ – on its website. It has been developed by SeeAbility together with Mencap service users. ‘My eye care’ has been created by people with learning disabilities and includes easy read factsheets and videos covering eye care related information. In addition to information about what happens during a sight test, the site has links to key aspects of eye health care including advice about wearing glasses, eye-operations and a section outlining the most common eye conditions

Visit SeeAbility's easy read website
 

 Reasonable adjstments in eye care The Public Health Observatory and SeeAbility have come together to publish a report brings together a number of examples of reasonable adjustments that can be used to make eye care services more accessible for people with learning disabilities.

Download the report from the IHaL website

Talking Therapies

The NHS Improving Access to Psychological Therapies (IAPT) promotes services in England that offer interventions for depression and anxiety that have been approved by the National Institute for Health and Clinical Excellence. The IAPT central team has set up a website to explain programme innovations in different regions of England, and to provide the practitioners and commissioners of talking therapies with documents and resources for adults, and children and young people.

The website also includes links to relevant reports and documents, such as National Institute for Health and Clinical Excellence guidance and research, and to other websites, such as that of NHS Choices.

Find out more on the IAPT website 



Department of Health - Personal Budgets easy read leaflet

The English Department of Health (DH) has launched a new, easy read leaflet on personal health budgets. It explains what a personal budget is and includes personal stories, answers to frequently asked questions and further sources of information. The leaflet is part of the DH’s pilot programme, which, subject to a successful evaluation, involves granting anyone who receives NHS continuing care the right to ask for a personal budget, including direct payment for health care.

Download the easy read leaflet from the DH website


Easy Read Health Wales website 

Easy Read Health Wales brings together Easy Read information about all areas of health relevant to people with a learning disability in Wales, enabling them to find out about illnesses, checking their health and leading healthy lives.

People with a learning disability who speak Welsh will also be able to find information on health relevant to their needs.

Visit the Easy Read Health Wales website


"Understanding personal health budgets" leaflet 

The Department of Health has published a revised version of the leaflet on personal health budgets relating to personal health budgets pilot programme. The leaflet explains the concept of a personal health budget being offered to individuals, especially those with a long term condition, and how this can also be used by healthcare professionals, commissioners, and support organisations. It also includes answers to frequently asked questions, shares personal stories and provides further sources of information about personal health budgets.

Download the personal health budget leaflet


The General Medical Council's Learning disabilities website

This site aims to help doctors provide better care for people with learning disabilities by: identifying the issues; highlighting patient perspectives and showing how to put GMC guidance into practice.

More on their website here.


Nurchat - a fortnightly Twitter chat for nurses
  

An online nurses network of over 700 nurses of all branches on Twitter, meetings take place every two weeks to discuss the topic of the day. In April they held a Twitter chat on nursing and learning disability issues.

For those new to twitter, there are some handy hints on how to use it on the above website, and the transcripts of the conversations that have previously taken place. There are a growing number of learning disability nurses using twitter to keep up to date and share their thoughts on practice.

A good hub for this activity is through www.learningdisabilitynurse.com

More here: http://nurchat.blogspot.co.uk/

picTTalk

picTTalk is a piece of software developed with children and adults with a learning disability, to facilitate stories and conversations about their illness, their life, the impact of their illness, or their future.

Using cue card images via a software interface, provides professionals with a tool that they can use to help children and young people talk about sensitive topics, ask questions about their concerns, and talk about their illness. 

More about picTTalk on their website


Contraceptive choices for women with learning disabilities - an Open University research project

Contraceptive choices for women with learning disabilities is an Open University research project. This inclusive project set out to explore women’s contraceptive decision-making and sought to include women with mild to moderate learning disabilities as well as Open University interviewed 19 women living in several locations across the United Kingdom.  

Find out more information

Download the full report





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My Own Place

'My Own