This section has resources from a range of organisations in these subject areas:
If you know of any other resources that would be useful to others, let us know on enquiries@bild.org.uk
You may be interested in the links to easy read resources in the Easy Read section of this web site.
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.
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. 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.
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. October 2012: 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.
Download the article 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. January 2013: 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
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.
The report can be downloaded free from the Caroline Walker Trust website.
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.
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 Photo Recipes, a website offering recipe information
Produced by an Occupational Therapist based in Bristol working with adults with learning difficulties, the recipes were devised during Independent Living Skills Assessments and were produced to meet the specific needs of each client. As a result they differ in style, format and objective. However they can easily be adapted to suit your own requirements.
Visit the Photo Recipes 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
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The Social Care Councils (responsible for the regulation and registration of Social Workers and other Social Care Workers) are:
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.
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.
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 Patient Advice and Liason Service (PALS) is an NHS service which helps to resolve concerns or problems when using the NHS: www.pals.nhs.uk
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:
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.
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
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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 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.
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.
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.
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.
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 on the Radar website.
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.
Stop Hate Crime Learning Together training pack
Inclusion North and Coast-2-Coast have put together the 'Stop Hate Crime Training Pack & Video'. This guide is 'for everyone who may, in the course of their work, come across people with learning disabilities who are, or may become, victims of hate crime.
Download the training pack
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.
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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.
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. January 2013: Reasonable adjstments in eye care The Public Health Observatory and SeeAbility have come to gether 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 >
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.
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
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.
Download the leaflet >
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.
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.
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.
Epilepsy Information
The Epilepsy Society have produced have produced an information leaflet about epilepsy and people with learning disabilities.
"Epilepsy is more common in people with a learning disability than in the general population. About 30% of people (nearly 1 in 3) who have a mild to moderate learning disability also have epilepsy. The more severe the learning disability, the more likely it is that a person will also have epilepsy. Around 20% of people (1 in 5) with epilepsy also have a learning disability. "
Download their information leaflet.
May 2012: An Ordinary Life
As part of the Foundation for People with Learning Disabilities' An Ordinary Life project, they have launched a free interactive booklet and communication passport to help families transform the quality of life for their child with complex health needs or who is dependent on medical technology to survive.
Find out more on their website >
April 2012: West Midlands Obesity Charter 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 31 January 2012.
Read the Charter
Visit the website
April 2012: 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.
April 2012: 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 disbility 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/
January 2013: New easy read eye care information from SeeAbility
Visit SeeAbility's easy read website >
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My Own Place 'My Own Place' a report from the National Devlopment Team for Inclusion, provides practical tools and advice to help young people with disabilities and their families have good information and be supported to plan so that they have equal access to housing opportunities. This report is part of the three year Department of Health funded project on Housing and Social Inclusion.
Based on the real experiences of young people and their families, the report provides a ‘Housing Pathway’ to be followed as young people plan for their adulthood. The Pathway also sets out the most important issues that need to be tackled strategically in a local area, so that commissioning can ensure high quality information and support for young disabled people.
Download the report from the NDTi website. Two further reports from the NDTi on housing are:
Making the Move: 'Making the Move' has been written to help people planning and managing housing and support services for people with learning disabilities. It explains the difference between supported living and residential care. It describes different types of housing and support that should be available for people, and how to go about putting them in place.
Find out more on the NDTi website. The Real Tenancy Test 'The Real Tenancy Test' has been written to help people providing housing and support services for people with learning disabilities. It is a simple test, based on a small number of questions, to help review whether services called supported living are really giving people their housing rights and helping them to live how they want to. It describes important things to consider when planning housing and tenancies for people, including when to use different types of tenancies and how to handle issues of capacity.
Find out more on the NDTi website.
Housing Options Housing Options is an independent advice and information service for people with learning disabilities. The aim is to assist people with learning disabilities achieve greater control over aspects of their life and to provide more housing and support choices - more options for individuals, parents, social services, care agencies.
Housing Options exists to help people obtain the best option for their circumstances and this includes independent supported living and home ownership for people with learning disabilities. It does this by providing practical help, advice and information. It can be a gateway to accessing different types of social housing.
They have a general information website and an easy read website.
A Life Like Any Other? Human Rights of Adults with Learning Disabilities'
Joint Parliamentary Committee on Human Rights The report of the Joint Parliamentary Committee on Human Rights, made up of members of both the House of Commons and the House of Lords. Among the Committee's observations were:
"The evidence seen by the Committee shows it is still necessary to emphasise that adults with learning disabilities have the same human rights as everyone else."
"Evidence to the Committee suggests that adults with learning difficulties are more liable to social exclusion, poverty and isolation, and that efforts to improve their lives have had little
impact on some."
"The Committee is concerned that adults with learning disabilities in health and residential settings suffer neglect, abuse, discrimination and indifference."
Download Volume One - The Committee report Download Volume Two - The written evidence Download the easy read summary.
Implementation of the rights of disabled people to independent living This Report, published in March 2012, examines the UK's implementation of the right to independent living for disabled people, as enshrined in Article 19 of the United Nations Convention on the Rights of Persons with Disabilities.
Despite the UK having ratified the UNCRPD, independent living does not currently exist as a freestanding, justiciable right in UK law. This Report argues that the existing matrix of human rights, equality and community care law, while instrumental in the protection and promotion of the right to independent living, is not sufficient. The right to independent
living should be added as an outcome in any forthcoming Bill on adult social care in England.
Download the report.
Human Rights in Healthcare - a framework for local action A Department of Health document, developed with the British Institute of Human Rights and published in 2007, the purpose of this framework is to assist NHS Trusts to develop and use a human rights based approach (HRBA) to support their core business of planning and delivering high quality and accessible health services for all.
Download the report. Human Rights Act 1998
You can read the Human Rights Act on the legislation.gov.uk website.
A Guide to the Human Rights Act Produced by the Ministry of Justice, this is an easy read guide for people with learning disabilties.
Download the Guide.
Your Human Rights - a guide for disabled people Produced by the British Institute of Human Rights, this guide provides practical information about human rights, and their relevance to disabled people. It is written directly for disabled people. The guide will also be useful for people working with disabled people or those wanting to learn more about the impact of human rights on disabled people.
Find out more and
download the guide from the BiHR website where you will find lots more information and resources about human rights.
Ours to own - Your Human Rights An Easy Read publication from the Equalities and Human Rights Commission about what human rights are and why they are important, also has examples of how they can be used.
Download a copy.
Equality & Human Rights Commission online human rights resource for public sector The Equality and Human Rights Commission has an online resource about human rights to help public sector bodies in England and Wales and organisations carrying out public functions and advocacy.
The resource focuses on nine public sectors areas: adult social care; children's services; health; housing; education services; local government; criminal justice, courts and prisons; policing and immigration and asylum.
Find out more on their website.
If you can recommend any information about people with learning disabilities that would be useful to others, please let us know at enquiries@bild.org.uk
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