Challenging behavior support.
About Challenging Behaviour
Information Sheets and DVDs
Information Sheets and DVDs - Menu
Being a Family Carer
Challenging Behaviour - the basics
Challenging Behaviour: what to do
Positive Behaviour Support (PBS)
Specific Behaviours
Communication and Behaviour
Health and Challenging Behaviour
Mental Health, Medication and ATUs
Housing and Support
Education
Rights and the Law
Policy and Best Practice
Frequently Asked Questions
DOLS
The deprivation of Liberty safeguarding
When Things Go Wrong
The information on this page will help you understand what is meant by poor support and abuse, and who to talk to if you suspect your relative is coming to harm or not being cared for properly.
Meeting the Challenge 5: Poor care and abuse
One of the 'Meeting the Challenge' guides produced by the Challenging Behaviour Foundation, alongside Mencap and Respond. This factsheet provides information to help you understand what is meant by abuse and poor care / support. It also provides information about who to talk to if you suspect that your family member is experiencing either or both of these things and needs safeguarding.
Meeting the Challenge 3: What if it is getting difficult to support my family member at home or in their current service?
One of the 'Meeting the Challenge' guides produced by the Challenging Behaviour Foundation, alongside Mencap and Respond. This factsheet will provide you with information about what can happen when it becomes difficult to support a family member at home, or in their current service and they require more specialist assessment and support.
Safeguarding
"I am worried about the safety of someone with a learning disability, what should I do?"
- This information answers questions about what to do if you have concerns about the welfare of a person with learning disabilities, and what the safeguarding referral process involves for both children and adults.
Trauma support
"Who can support my daughter to get over a traumatic experience?"
- This FAQ gives guidance about accessing counselling and other support for someone with a learning disability who has been through trauma or abuse. Family carers may need this support as well as their relatives.
Being a Family Carer
The following pages give information about the experience of being a family carer, what support is available, and some frequently asked questions.
Support for you
The Challenging Behaviour Foundation runs a number of support services for families caring for a child or adult with severe learning disabilities and behaviours that challenge.
Family Support Service - our Family Support Team offer a listening ear and provide free information about challenging behaviour to anyone who supports someone with a severe learning disability. You can read more about this here.
Family Carers' Email Network - the Family Carers’ Email Network enables you to be in touch with a number of families around the UK. You can share experiences, information and receive support. Please see here for more information, including an application form.
Family Linking Scheme - the Family Linking Scheme can match you with a family carer Link volunteer to speak to on the phone regularly, who having also been in a similar situation, may be able to offer information and useful ideas. See here for an application form.
Resources about being a Family Carer
Impact of Caring on Families
This information sheet looks at the impact caring can have on families and where families can access support.
Family Carer's Information Directory
Details of organisations, books, blogs and information that family carers may find useful.
Frequently Asked Questions about Being a Family Carer
FAQ: Circles of Support
"Do I have to do this alone?"
- read our answer to this frequently asked question, and find out about Circles of Support and how you could build one with your relative.
FAQ: Short Breaks
"I'm reaching crisis point and need a break - what can I do?"
- this FAQ provides information about what rights family carers have to short breaks, where to find information about what short breaks services are available in your local area, and a summary of the wide range of short break services that are available, and can be used flexibly to meet your family's needs
"My relative has been excluded from local short break services because of his / her challenging behaviour - what else can I do?"
- families who find themselves in this situation may feel like they have no other options. However, there are a number of things you can do to make sure you have access to short breaks if you need them. This FAQ explains more.
FAQ: What will happen when I'm gone?
- a difficult period of transition may occur when a parent or other family care giver passes away. This FAQ aims to provide some helpful tips for planning ahead, and information about what possible financial and housing plans can be put in place to protect your relative in the future.
Being a Family Carer
The Impact of Caring on Families
This information sheet looks at the impact caring can have on families and ways to help you cope.
QUICK READ
How can caring affect families?
When a child is diagnosed with a disability the amount of information and support offered to the family varies. Families can feel very alone and unsure about how to support their child, or what will happen in the future. Seeing challenging behaviour appear in a young child can be upsetting and confusing. There is a lot to learn and getting professional help and specialist services can be difficult.
Families are often socially isolated and can be left out of family events, activities and places in the local community because of their family member’s behaviour. Family carers say they have feelings like stress, frustration, anger, guilt, shame and loneliness, or feel that no-one understands what they are going through. Feeling low or stressed can sometimes lead to mental health problems like depression or anxiety, that need medical help. Relationships break down more often for people whose son or daughter’s behaviour challenges. Finding support and time alone to relax is really important, but can be hard. Meeting other parents is really helpful to get support and to share ideas of what has helped.
Eating well, exercising and getting enough sleep can be tough when your family member’s needs come first, especially if they have sleep problems. Families can plan their time to do activities that are good for all the family and be healthy together.
Parents might not be able to work and extra money is spent if things get broken or equipment and changes are needed at home. There are benefits, direct payments and grants that families might be entitled to.
What help can families get?
The Challenging Behaviour Foundation’s Family Support Service offers confidential emotional support by telephone or email. We also have a Family Carers' Email Network to put you in touch with other families.
Carers’ charities, support groups and parent networks all offer support.
Siblings can get in touch with other young people in their position or join in special activities through young carers charities.
A carer’s assessment from adult social services looks at whether you need extra support. This can be short breaks or respite, financial support, or help to get into training or work.
Families may be entitled to different benefits or funding, like direct payments.
Further information for Family Carers
Details of organisations, books, blogs and information that family carers may find useful.
FAQ: How to make a complaint
"I am unhappy about my daughter’s care. What can I do?"
- This FAQ provides useful information to family carers seeking for advice on how to raise concerns about their relative's care with professionals or care providers.
For Families
Do you support someone with severe learning disabilities and behaviours that challenge? We can help.
The Challenging Behaviour Foundation
We are the charity for people with severe learning disabilities whose behaviour challenges. We’re making a difference to the lives of children and adults across the UK through:
providing information about challenging behaviour
peer support groups for family carers and professionals
supporting families by phone or email
running workshops to reduce challenging behaviour
speaking up for families nationally / campaigning
Our vision is for anyone with severe learning disabilities who displays challenging behaviour to have the same life opportunities as everyone else.
We work to improve understanding of challenging behaviour, empower families with information and support, and help others to provide better services and more opportunities.
The Early Intervention Project
Early Intervention for children with learning disabilities whose behaviour challenges
For all resources associated with the Early Intervention Project, please see our brand new website!
pavingtheway.works
Specific Behaviours
The following pages all give information about specific behaviours, including self-injury, pica (eating inedible objects), difficult sexual behaviour, and running off.
Self-Injurious Behaviour
This information sheet is about self-injurious behaviour. Self-injurious behaviour is any behaviour that results in someone causing physical harm to him or herself.
DVD Self Injurious Behaviour
What causes self-injurious behaviour? What action should parents and carers take? This DVD is free for family/ unpaid carers in the UK. To order for free, download our resource order form or contact us.
Pica and Polydipsia
This information sheet is about 'Pica' (a term which refers to eating objects which are not suitable to be eaten) and 'Polydipsia' (a terms which refers to drinking excessively).
Difficult Sexual Behaviour Amongst Men and Boys
This information sheet is designed to help family carers understand and respond to any sexual behaviour which may cause difficulties for their son or others involved.
Frequently Asked Questions about Specific Challenging Behaviours
FAQ: Running off
"My relative runs off - from the house and/or when out in the community. I don't know how to stop them doing this in order to keep them safe."
- this FAQ aims to support families whose relative may run off. It looks at what the possible causes of this behaviour may be and what strategies you can use to reduce this behaviour occurring and keep your family member safe.
FAQ: Destructive behaviours (coming soon)
FAQ: Stripping (coming soon)
FAQ: Hitting, kicking, biting and pulling hair (coming soon)
Mental Health, Medication and Inpatient Assessment and Treatment Units (ATUs)
The following pages give information about mental health, the use of medication in the treatment of challenging behaviour, and what to do if your relative is being placed in an Assessment and Treatment Unit.
Mental Health Problems in people with a learning disability
An information sheet about different mental health problems and appropriate treatments.
The Use of Medication for Challenging Behaviour
Read this information sheet to understand more about the use of medication, when it is and is not appropriate, as well as descriptions of types of medication.
Medication Pathway for Family Carers
This practial resource has been specially developed for family carers concerned about the use of psychotropic medication for their relative with a learning disability, autism or both.
Use the Medication Pathway online resource (a minisite linked to this website)
Or order a printed copy of the Medication Information Pack by contacting the CBF
The resources are part of the STOMP programme, led by NHS England.
Inpatient Assessment and Treatment Units (ATUs)
This section contains information including:
how to prevent admission to an Assessment and Treatment Unit (ATU)
what to do if someone has been admitted to an Assessment and Treatment Unit (ATU) and how to plan for their successful discharge
what to do when things go wrong
the Challenging Behaviour Foundation's 'After Winterbourne' campaign to enable people to get the right support in their communities and move out of institutions like Winterbourne View
Trauma Support FAQ
Ideas about support for people with learning disabilities who have experienced trauma such as inappropriate restraint, seclusion or medication, or who have been abused.
Communication and Challenging Behaviour
The following resources give information about different aspects of communication and challenging behaviour.
Communication and Challenging Behaviour
This information sheet is about communication. Many people with learning disabilities have some difficulties with communication; this may be in understanding what other people are 'saying' or in being able to express themselves. Improving communication may be helpful in reducing or stopping challenging behaviour.
Teaching New Skills
This information sheet explains how to support children and adults with learning disabilities in learning a new activity, communication skills and coping skills. The opportunity to learn new skills can give people greater independence and choice, help them to communicate their needs and allow them to try new things.
Health and Challenging Behaviour
The following pages give information about healthcare.
Health and Challenging Behaviour Information Sheet
This section contains a video clip and an information sheet that will tell you about:
some of the common health problems experienced by people with learning disabilities
how health problems might increase challenging behavior
how some challenging behaviours can contribute to health problems
how you can help a person with a learning disability stay healthy
Frequently Asked Questions About Health Care
There are some questions which are frequently asked and here we have provided answers to these with links to further information. If you have unanswered questions after reading this information please contact us for individual support.
FAQ: Consenting to Treatment
"The doctor said he couldn’t do any tests because my son wouldn’t cooperate and now he is an adult “it is his choice”. What can I do?"
- here are our answers about consenting to treatment, including information about mental capacity.
FAQ: Reasonable adjustments
“We find it difficult to go to health appointments – what should health professionals do to make it easier?”
- services must make reasonable adjustments by law so that your relative can access healthcare. This FAQ provides further details about this.
FAQ: Dentist appointments
"We find it really hard to go to the dentist, is there anything we can do to make it easier?"
- here is our answer to a question about going to the dentist when your relative can display behaviour described as challenging.
Key messages of PBS
Basic information and references, produced jointly by the CBF, PBS Academy, BILD, Skills for Care and Health Education England.
Frequently Asked Questions about PBS
There are some questions which are frequently asked and here we have provided answers to these with links to further information. If you have unanswered questions after reading this information please contact us for individual support.
FAQ: Why might PBS be a helpful approach?
Find out why PBS is the recommended approach to support people with learning disabilities who display challenging behaviour.
FAQ: How do we make PBS happen?
All about overcoming the barriers to putting PBS in place for people with learning disabilities.
Understanding Behaviour
This film explains how we can use PBS to understand someone's behaviour.
Children
Challenging Behaviour: The Basics
Understanding Challenging Behaviour: Part 1
An information sheet with basic information about why challenging behaviour happens and what can be done.
Finding the Causes of Challenging Behaviour: Part 2
This information sheets helps you to understand more about what causes challenging behaviour and what help you can get.
An Introduction to Challenging Behaviour DVD
A Consultant Clinical Psychologist, along with family carers present a basic introduction to challenging behaviour associated with severe learning disabilities.
To read more and view a short clip click here
At a Glance Guide to Getting the Right Support for Children
Produced in partnership with the Social Care Institute for Excellence this guides set out how to get the right support for your relative.
Challenging Behaviour Information Pack
This information pack contains 12 of our information sheets about severe learning disability and behaviour that challenges. (Includes a summary version of each sheet along with a full version) Click here to find out which information sheets are in this pack.
Communication
Communication and Challenging Behaviour
This information sheet explains the link between communication and challenging behaviour.
Communication and Challenging Behaviour DVD
In this 45 minute DVD we meet Rhys, Laura, Sean and Isobel to examine the link between communication and challenging behaviour.
To read more and view a short clip click here.
Specific Behaviours
Pica (Eating inedible objects)
This information sheet helps you to understand how to help a child or adult who is eating inedible objects e.g. stones, faeces or clothing.
This information sheet explains how to get help for self-injurious behaviours such as eye-poking, head banging, self-biting and skin picking.
The UK's leading authorities on self-injurious behaviour, join forces with two families to offer clear and practical information and advice to families caring for individuals with severe learning disabilities.
To read more and view a short clip click here
Responses to Challenging Behaviour
Positive Behaviour Support Planning: Part 3
Are you looking for information on managing challenging behaviour? If so this is the information sheet for you. It explains what a positive behaviour support plan is, who needs one and why.
Challenging Behaviour - Supporting Change DVD
In this 2-disc DVD set find out how a functional assessment can help you to understand challenging behaviour and identify ways of supporting behaviour change
To read more and view a short clip click here
The Use of Medication in the Treatment of Challenging Behaviour
Read this information sheet to understand more about the use of medication and when it is and is not appropriate.
This information sheet is useful for anyone who is using or considering the use of physical interventions such as restraint.
An information sheet which gives details of specialist equipment and safety adaptations to improve safety and protect your home.
Health and Challenging Behaviour
Health and Challenging Behaviour
Understand more about the link between health and challenging behaviour by reading this information sheet.
An information sheet about different mental health problems and appropriate treatments.
Education
For Families: Getting an Education, Health and Care Plan
This summary sheet contains guidance for parents and carers on how to request an EHC plan, the processes involved in getting one, and what the new EHC plans should include. (The full information sheet is coming soon)
For Professions: Developing an Education, Health and Care Plan
This information sheet contains guidelines for professionals on developing EHC plans for young people with severe learning disabilities and behaviour described as challenging, following their introduction in September 2014.
Read this information sheet to find out what a SEN statement is and what to include to help your child at school.
A list of residential schools and colleges in the UK for people with severe learning disabilities and behaviour described as challenging.
Positive Behaviour Support Study Pack for Schools and Colleges
Based on our successful Positive Behaviour Support workshops and Supporting Behaviour Change DVD, our Positive Behaviour Support Study Pack gives staff the skills to understand and reduce challenging behaviour in young people with severe learning disabilities.
The pack contains detailed, practical information, exercises, as well as video clips of families and professionals. It is designed to be used by schools for staff learning and development, and as an ongoing resource. Read more here.
Social Care
An information sheet to help when considering what your relative’s future should look like.
Planning for the Future Information Pack
An information pack written for people planning for the future of children aged 12 and upwards (transition), and those concerned about the support needs of adult sons and daughters.
Contents include: Know your rights; Know the processes; Know your options; Case studies; Understanding the funding; Safeguarding & protecting the individual. To read more click here.
An information sheet which provides ten top tips to help you get the right support for your family member aged over 18.
An information sheet which sets out how to get legal authority if your family member is over 16 and unable to make decisions about their money, housing or health themself.
We get asked some questions a lot. Here are our answers to two questions about what to do when you're worried professionals are making decisions for your relative without consulting you.
"I think I need legal advice on behalf of my family member who has a learning disability. How do I go about this?"
- This FAQ provides helpful pointers to finding accurate information about the law, instructing a solicitor on your family member’s behalf, finding and choosing a solicitor and information on funding legal representation.
Housing
This guide is to help you and your relative think about the different types of accommodation and how they are funded.
We explain what your options are in 8 ways to get a house. To read more click here.
What Good Support Looks Like
A series of resources that show what good support looks like for people who have a severe learning disability and behaviour that challenges. Includes tools to help families use Positive Behavioural Support and find good support.
Resources and Examples of Good Support
Meeting the Challenge 2: What does good support look like for adults with learning disabilities who display challenging behaviour
One of the 'Meeting the Challenge' guides produced by the Challenging Behaviour Foundation, alongside Mencap and Respond. This factsheet describes what ‘good support’ should include for people with learning disabilities whose behaviour is described as challenging. Good support will help the person lead a full, active life and help avoid challenging behaviour escalating into a crisis.
DVD Everybody Matters
Everybody Matters is a short film starring Colleen and Shaun, both of whom have learning disabilities and have been described as displaying challenging behaviour. This has meant that in the past both Shaun and Colleen have experienced poor support and had restricted, unhappy and sometimes unsafe lives. Their stories show that everyone can be supported to live a full and active life in their community.Click here to find out more and watch the trailer.
Positive Behavioural Support - Guides for Family Carers (PBS Academy)
This pack of resources aims to provide information about Positive Behavioural Support (PBS). It explains what it is; what it looks like in practice; provides questions to ask to check that PBS is being delivered well in the setting you are looking at and guidance on how family carers can find out more including advice on training.
Introduction to PBS Academy Family Carer Resources
What is Positive Behavioural Support
What should Positive Behavioural Support look like?
Questions to check that Positive Behavioural Support is being used well
Family Carers using Positive Behavioural Support
Practical tools to help you
When Things Go Wrong
A group of resources that will help you understand what is meant by poor support and abuse, who to talk to/what to do if you suspect your relative is coming to harm or not being cared for properly, and information about legal support.
Transition Planning / Making Changes to Support
A series of resources that can help plan a succesful transition. Includes information about the transition from childhood to adulthood (information specific for England, Wales and Northern Ireland), and about making plans for when family carers are no longer able to provide a caring role.
Other Helpful Resources about Housing and Support
Specialist Equipment and Safety Adaptations
An information sheet which gives details of specialist equipment and safety adaptations to improve safety and protect your home.
Getting an Education, Health and Care Plan (age 0-25)
This summary sheet contains guidance for parents and carers on how to request an EHC plan, the processes involved in getting one, and what the new EHC plans should include.
Getting the best support package: 10 Top Tips
An information sheet which provides ten top tips to help you get the right support for your family member aged over 18.
Planning your House
A detailed guide to help you plan what kind of house your relative will live in, with information from funding to assistive technology.
Early Intervention Project
"We want to pave the way to an ordinary life for children with extraordinary needs. We believe that understanding the cause of challenging behaviours is the first step on that path."
Family Support Service
Information
Family Linking Scheme
Family Carers' Email Network
Search by Age
Supporting a child, teenager or adult? Click on the word child, adult or teenager to jump to the right section for you.
All our information sheets are available to download free of charge on this website. All our resources are available free to family/ unpaid carers in the UK. If you are a family carer and wish to order an information sheet, pack or DVD please contact us directly or see our resource order form. For professionals and registered charities, please order online or see our resource order form.
Teenagers
Challenging Behaviour: The Basics
Understanding Challenging Behaviour: Part 1
An information sheet with basic information about why challenging behaviour happens and what can be done.
Finding the Causes of Challenging Behaviour: Part 2
This information sheets helps you to understand more about what causes challenging behaviour and what help you can get.
An Introduction to Challenging Behaviour DVD
A Consultant Clinical Psychologist, along with family carers present a basic introduction to challenging behaviour associated with severe learning disabilities.
To read more and view a short clip click here
At a Glance Guide to Getting the Right Support for Teenagers
Produced in partnership with the Social Care Institute for Excellence these guides set out how to get the right support for your relative.
Challenging Behaviour Information Pack
This information pack contains 12 of our information sheets about severe learning disability and behaviour that challenges. (Includes a summary version of each sheet along with a full version) Click here to find out which information sheets are in this pack.
Communication
Communication and Challenging Behaviour
This information sheet explains the link between communication and challenging behaviour.
Communication and Challenging Behaviour DVD
In this 45 minute DVD we meet Rhys, Laura, Sean and Isobel to examine the link between communication and challenging behaviour.
To read more and view a short clip click here.
Positive Behaviour Support Planning
Positive Behaviour Support Planning is the third information sheet in a series. It is recommended that it is read alongside ‘‘Understanding Challenging Behaviour: Part 1’’ and “Finding the Causes of Challenging Behaviour: Part 2’’
Physical Interventions and other restrictive practices
This information sheet provides information about appropriate and inappropriate use of physical interventions and other restrictive practices.
This information sheet provides information about when medication should and should not be prescribed for individuals with severe learning disabilities and challenging behaviour.
Specialist Equipment and Safety Adaptations
This resource contains practical information about specialist equipment for children and adults with severe learning disabilities who display behaviour described as challenging. It also lists some information to carefully consider that can help to improve safety and protect the home.
Challenging Behaviour - Supporting Change
In this 2-disc DVD set find out how a functional assessment can help you to understand challenging behaviour and identify ways of supporting behaviour change
To read more and view a short clip click here
Challenging Behaviour: what to do
The following pages give information about what should - and what should not - be done to try to manage and reduce challenging behaviour.
Frequently Asked Questions about Getting Behaviour Support
"My son is displaying challenging behaviour - who can help us with this?"
- this provides some answers about what local and national behaviour support is available for families.
"I've been told that no-one can help me with my daughter's behaviour, what can I do?"
- what you can do if there is no appropriate support available. This includes a template letter you can use to write to your local Clinical Commissioning Group.
Early Intervention Project
"We want to pave the way to an ordinary life for children with extraordinary needs. We believe that understanding the cause of challenging behaviours is the first step on that path."
'Paving the Way' - the website
Paving the Way is a joint project from the Challenging Behaviour Foundation and the Council for Disabled Children – working in partnership with families and professionals to share and promote good practice.
www.pavingtheway.works
'Paving the Way' - the resource
The Paving the Way resource is a guide to develop effective local services for children with learning disabilities whose behaviours challenge. The guide may be useful for commissioners, professionals, and families, and can be downloaded here.
Support organisations
Thislist of support organisations is for anyone looking for help or a listening ear around concerns of abuse or poor care for someone they support.
Information
Information Sheets and DVDs
Mental Capacity Act Template LettersIf you're concerned that you are not being involved in decisions affecting your family member, our template letters are designed to help you challenge this.
A guide for Advocates (England & Wales)
If you are a professional advocate, or a family carer advocating on behalf of your family member, this comprehensive and practical guide to advocacy is for you.
Understand more about challenging behaviour, advocacy and the key issues which are likely to arise. To read more click here.