Impact Report 2014-2015
contents what we do the CBF journey information support peer support networks working together informing best practice post Winterbourne View looking forward financial summary
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The Challenging Behaviour Foundation (CBF) is the charity for people with severe learning disabilities and behaviour that challenges.
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Our vision is for all children and adults with severe learning disabilities who display challenging behaviour to live full and active lives in their community.
what we do
work together
influence decisions
peer support networks
workshops
promote best practice
drive change
support
telephone & email
information
resources
publications
online
what we do
Our mission is to improve understanding, empower families, and help others to provide better support, services and opportunities.
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the CBF journey
HOW WE BEGAN Viv Cooper (founder and CEO) My son Daniel was diagnosed with the rare genetic condition Cri du Chat syndrome shortly after he was born and we had no idea what to expect. When he started to bang his head on hard objects when he was a year old, we struggled to find practical information and support. By the age of 9, everyone was struggling to contain Daniel’s behaviours and it was decided that he needed to go to a 52-week specialist residential school. Unfortunately, this school was over 270 miles from our home. At the school, they tried to discover the function of Daniel’s behaviours. They worked on developing new skills and improving his communication. We thought: ‘Why didn’t we know this and do this when he was much younger?
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1997: Viv gathers volunteers and starts printing free information leaflets for family carers in her garage. Their aim was for individuals like Daniel, and their families, to be able to access the right information and support, in the right place, at the right time.
WHO WE ARE TODAY We are: 6 full-time and 10 part-time staff
working from our small office in Chatham
supported by 35 volunteers and
56 casual workers across the UK
The CBF Team 2014-2015:
Holly Butcher Family Support Worker & Volunteer Co-ordinator
Audrey Giles
Jacqui Shurlock
Expert by Experience Deputy Manager
Early Intervention Project Manager
Jayne Lingard
Jessie Humphreys Family Support Worker
Expert by Experience Project Manager
Gemma Grant Family Support & Policy Manager
Rup Phagura Finance Assistant
Emily Muir
Vivien Cooper
Family Support & Policy Intern
Founder and CEO
Helen Marron Finance and Admin Manager
Catryn Ladd Fundraising & Communications Manager
Laura Brown
Jo Read
Fundraising Officer
Admin Assistant
Carina Down
Team Administrator
Holly Dawson Communications Intern
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information IN 2014-2015:
elivered ed
to
ces ur
40 reso 23
439 people
4870
people received our newsletter, and our e-newsletter,
Our website was v 181,169 times
671
by 137,304 visitors
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a 47% increase on 2013-2014
RESOURCES We now have 29 printed resources and 4 DVDs, covering behaviour, health, being a family carer, and education, housing and social care. Our resources are, and always will be, free to family carers. We work closely with family carers and professionals to make sure that our information is relevant and up-to-date. This year we have developed:
For Professionals: Developing Education, Health and Care Plans
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For Families: Getting an Education, Health and Care Plan
we also updated 7 of our information sheets
NEWSLETTER
visited s
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with 43,865 repeat visits
Our newsletter, Challenge, was sent out in spring, summer and winter. Challenge is a practical resource, written and read by family carers and a wide range of professionals. Each edition contains the latest information about supporting someone with severe learning disabilities and challenging behaviour, changes in policy, and progress of CBF projects. This year we focused on: • ‘Getting it right early’ • ‘Communication’ • ‘Driving Change: Rights and choices’ We also sent out the first 3 issues of our brand new electronic newsletter, e-Challenge. So far, it’s going well – over 600 people have signed up to e-Challenge over just the first year! Over 90% of recipients say they learn about issues relating to challenging behaviour from the newsletter, and over 70% have said that they actively use this knowledge in their caring or professional responsibilities.
The strength of this newsletter is that it is practically and intelligently written; I view it as a resource not ‘light entertainment’ I feel it is my safety net – I have somewhere to turn to now
ONLINE More and more people are connecting with us and each other online and via social media. Our Twitter and Facebook pages have been a great way of meeting new families and supporters, keeping people up to date with our work, having discussions about key issues and sharing resources.
3110 followers
2438 followers
42%
26%
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support FAMILY SUPPORT TEAM Our Family Support Team provides individual support and information, and a listening ear, via phone and email.
In 2014-2015 we have‌
supported recieved
1593 enquiries
569 people
worked with
85 people
to give ongoing support for complex situations
a 73% increase over last 5 years
Sadly this year we have supported several families whose relatives have had traumatic experiences or died while receiving poor care. We have given emotional and practical support to these families, including helping them to find the right legal advice.
WORKSHOPS We run workshops in Positive Behaviour Support (Understanding Challenging Behaviour and Supporting Behaviour Change) and Communication and Behaviour. This year we have delivered 18 workshops around the UK with a range of groups and organisations. Our workshops have had a significant positive impact within families, schools and support providers.
parents and staff gain knowledge and develop support strategies
family life and family relationships improve families report less anger and depression
frequency and severity of challenging behaviour is reduced
workshop impact
What I like best about the workshop is working alongside each other, having the time to reflect on challenging behaviour, to step back from a situation and reflect on it, and then plan together. 8
KATE FARMER My daughter Katie is 18. She has Tuberous Sclerosis and is on the Autistic Spectrum. She can display behaviour described as challenging, such as biting wrists, shouting and stripping. She’s also friendly and sensitive, with a great sense of humour. relationships between family and school improve teachers report less anxiety and fear
When I first contacted the CBF I was feeling very unsupported and ignored. The CBF offered an understanding I had not experienced before, an exceptionally friendly ear and very useful information on anything to do with my daughter. I started to feel more able in my role. I realised there was a lot I could do to help my daughter.
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peer support networks
calm happy
EMAIL NETWORKS Our Professionals’ and Family Carers’ Email Networks are communities for people to anonymously ask questions, and share stories and advice, with others who work with or care for people with severe learning disabilities whose behaviour challenges.
stressed isolated worried frustrated guilty
There are 258 people in the Family Carers’ Email Network and 343 members of the Professionals’ Email Network.
We are like an extended family. We genuinely empathise with each other. FAMILY LINKING SCHEME We link family carers with Family Link Volunteers, so they can talk to someone who has been in their shoes. Our Family Link Volunteers attend free workshops giving training in Positive Behaviour Support, listening skills, and approaches and policies.
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I definitely feel less isolated. You don’t know people like that exist – with a wealth of knowledge relevant to your situation. Her desire is to truly help my son get a better life. She really cares.
new volunteers
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families supported
LOCAL CHAMPIONS We train family carer volunteers to be Local Champions, and represent the CBF at events across the country. Local Champions help to spread the word about our work, by running information stalls, giving talks, facilitating discussions, and sharing CBF information with local networks.
I can’t overstate the huge personal satisfaction volunteering with the CBF gives me. Travelling to different places to meet new people is such a refreshing change having been a lonely and isolated carer for so long. 10
BALWINDER SANDHU I turned to the CBF when my daughter, Mindy, became unhappy at her residential placement. They were fantastic – they had hours to listen to my concerns and help me with the practicalities of advocating for Mindy. Every time I spoke to CBF support workers I seemed to be re-charged to carry on fighting for my daughter and when I was feeling low they would pick me up.
I support the CBF by manning information stalls at events and conferences. I do presentations/talks to family carers and psychology students. I have also attended advisory group meetings and have become a Family Link Volunteer too.
I decided to become a volunteer for the CBF as I could not put a monetary value on the tremendous support that I received from them. Another reason why I became a CBF volunteer was so that I can support other parents who might be going through what I went through. I know how hard it is to find someone who understands what parents are going through and when they need that advice the most.
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working together We have a strong belief in the power of collaboration. At the heart of this is working with family carers to be able to support them more effectively. We also have close relationships with a range of specialist professionals (e.g. clinical psychologists and lawyers) who ensure that we have the right knowledge to support families.
professionals feedback & evidence gathering
information sharing
families strategic influencing
information & support
important decision-makers facilitating communication
CARE QUALITY COMMISSION (CQC) – EXPERTS BY EXPERIENCE (ExE) We have worked with CQC to recruit, train and support Experts by Experience to provide a unique family carer perspective on health and social care service inspections. Experts by Experience are family carers who have significant experience of supporting and caring for an adult relative with complex/high support needs. Our Experts by Experience: • Accompany CQC inspection teams • Talk to people using services and their families to gain their views • Contribute to the findings of the inspection and the final report • Attend events, consultations and staff training to develop CQC’s inspection processes and raise the profile of Experts by Experience • Contribute to the development of the Experts by Experience Programme and the way in which CQC involve people in their work.
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CQC INSPECTIONS
INVOLVING
ExEs THIS YEAR
Being an ExE gave me the opportunity to do something practical and meaningful for people living in institutionalised care. As a parent carer I had a very clear idea about how my son should be treated and would always conduct inspections from this point of view. 12
CHALLENGING BEHAVIOUR NATIONAL STRATEGY GROUP (CB-NSG) The CB-NSG was founded in 2008, and is an action-focused collaborative that plans strategically to deliver real change for children and adults with learning disabilities who display challenging behaviours. The CBF chairs the CB-NSG, and other core members are family carers, people with learning disabilities, representatives of professional bodies, researchers, service providers and practitioners.
It’s the one place I can think of where everyone gets together and really thinks about what needs to happen. The CB-NSG has met twice in the past year:
Campaigning this year: Concerns raised by the CB-NSG, families and campaigners
National Audit Office (NAO) announced an inquiry into the care of people with learning disability and challenging behaviour
‘Children first’ (March 2014) Early intervention – what are the priorities for change? • Positive Behaviour Support – developing a competent workforce
CB-NSG steering group and members provided evidence to the NAO
NAO published a scathing report and led to scrutiny by the Public Accounts Committee (PAC)
CB-NSG members Viv Cooper and David Congdon acted as witnesses
NHS England committed to a closure programme of Assessment and Treatment Units for people with learning disabilities
‘Skills, Development and Leadership’ (October 2014) Action planning around: • Adult Intensive Support Teams • A Positive Behaviour Support Academy • Translating the 5 good communication standards into practice 13
informing best practice THE EARLY INTERVENTION PROJECT (EIP) Run by the CBF and the Council for Disabled Children (CDC) The EIP is a joint project run by the CBF and the Council for Disabled Children (CDC). Children with learning disabilities and behaviour that challenges need good support early in childhood. The EIP aims to deliver better outcomes for children across the country, by promoting the right support, in the right place, at the right time. Achievements in the first 18 months of the project:
A focus group with children and young people with learning disabilities
A video of young people talking about favourite activities
7 workshops with family carers and professionals
A Briefing Paper – the first of its kind – which has been used by 100s of people to inform current practice and development
A VISION FOR CHILDREN: What should support look like?
Raised profile of children with learning disabilities whose behaviours challenge Groups have increased their focus on this group of children
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Previously disconnected projects have been joined up Evidence produced has been used to inform processes like the Key stakeholders have CAMHS review committed to making use of the relevant evidence
MEDWAY ADVOCACY PROJECT (MAP) Run by the CBF and the Tizard Centre Throughout the country, there is a critical lack of independent advocates for people with learning disabilities. MAP trialled a unique person-centred approach to non-instructed advocacy, and aimed to improve the lives of 6 individuals with severe learning disabilities and behaviours that challenge as they went through a period of transition. The project recruited, trained and supported independent advocates for each individual – who, where possible, acted in partnership with a family or friend advocate who had known the individual a long time. The project built on the CBF resource ‘A Guide for Advocates’, which is a practical tool for both family carer and professional advocates supporting someone with learning disabilities who displays behaviour that challenges. An evaluation of the project found clear benefits of long-term, consistent, independent advocacy. The project now aims to produce a resource about commissioning independent advocacy and to work with advocacy organisations to develop a strategic approach to increasing the availability and quality of independent advocacy for this group of individuals.
The actual advocacy work they did for the individuals was really beneficial. Looking back it doesn’t seem like a lot of changes were made but I think they did make a big difference. It can be the little things that make a big difference to people with learning disabilities. Steering group member
RESEARCH PROJECTS We are committed to supporting evidence-based practice and therefore support a number of research projects through input to steering groups. We work closely with the Tizard Centre – one of the UK’s leading academic groups in learning disability. During the year we have been involved in these projects: • A project on preventing challenging behaviour within supported services for adults with complex needs. • The development of a programme for early, positive approaches to support for family carers. We have also worked with: • University College London (UCL) in research on Positive Behaviour Support training for staff. • The School of Social Care Research, where our CEO, Viv Cooper, is a member of the carer and user group.
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post Winterbourne View In 1992, the Mansell report recognised hospitals as the wrong model of care for people with learning disabilities, yet their use continued. In May 2011, the nation was shocked by a BBC Panorama programme on Winterbourne View, exposing the horrific abuse of people with learning disabilities. The CBF had already worked with the CB-NSG to develop the Challenging Behaviour Charter, which outlines the rights of people with learning disabilities whose behaviours challenge, and the actions needed to make sure those rights are upheld. We felt strongly that we needed to respond to the Winterbourne View scandal to ensure families’ experiences were taken into account and meaningful change was achieved.
MAY 2012
Mencap and the CBF produce ‘Out of Sight’, a report which tells the stories of people who have experienced terrible neglect and abuse in institutions like Winterbourne View. We call for people with learning disabilities to be discharged from these inappropriate settings, and supported locally with the right care to meet their needs.
DECEMBER 2012
The Government publishes a concordat in which they commit to moving all people with learning disabilities out of Assessment and Treatment Units by June 2014. The first meeting between CBF and Mencap’s campaign families and the Care and Support Minister, Norman Lamb. The families have been supported to raise concerns to the Minister in meetings throughout the campaign.
JUNE 2014
The Government fails to meet its deadline of moving people with learning disabilities out of Assessment and Treatment Units. Data collection shows there are still more people going into these units than there are coming out. The CBF and Mencap publish ‘Winterbourne View: The Scandal Continues’ to highlight the missed deadline. We launched a petition calling for PM David Cameron to take responsibility for the Government’s failure. The CBF launched their film, ‘Everybody Matters’. The film tells the stories of Colleen and Shaun, who previously received poor care and were restricted and unhappy. Now Colleen and Shaun are well supported to lead active and fulfilling lives in their communities. The film has been screened at events across the country. The CBF and Mencap facilitate a meeting between the Care and Support Minister, Norman Lamb, and 17 year old Fauzia and her family, at the service where she had been for 20 months.
NOVEMBER 2014
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NHS England accepts that the current system of care for people with learning disabilities and behaviour that challenges is unacceptable. Sir Stephen Bubb, CEO of ACEVO, produces a report commissioned by NHS England, highlighting actions that are needed for change.
JOSH WILLS In 2012, Josh Wills was moved to an Assessment and Treatment Unit in Birmingham, 6 hours from his home in Cornwall. Josh has severe autism, and his self-harming is so severe that it is life threatening. Since February 2014, we have been supporting Josh’s family to campaign for his return to Cornwall. They form part of our Campaign Families Group, all of whom play an important role in speaking up for everyone with learning disabilities and behaviour that challenges across the country.
“Joshua’s world and our world changed in 2012 never to be the same again. Authorities in Cornwall deemed that Joshua’s needs could only be met in an Assessment and Treatment Unit (ATU). We were led to believe that Josh would be sent away for a 12 week assessment, but it soon became apparent that Cornwall did not consider Joshua’s return an option. It’s a 6 hour journey from Cornwall to the ATU. We fear that something awful will happen and we won’t reach him in time. It has taken the support of the CBF and Mencap to very slowly get Joshua’s voice heard, through first the public petition and then the consequent meeting with Norman Lamb (Care and Support Minister) and his team.”
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looking forward NEXT YEAR WE PLAN TO‌
Produce a new information DVD about communication for family carers. Expand our peer support networks so we can support more families. Run another 3 Volunteer Welcome Workshops to recruit more family carer volunteers.
Continue our work on early intervention by creating a resource from all we have learnt so far.
Continue to work with others to improve the quality of support and services. Continue to facilitate the CB-NSG and its work.
Refresh our newsletter and website so our information is more accessible and reaches more people.
Increase our accessibility for families from hard-to-reach and underrepresented groups.
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financial summary INCOME AND EXPENDITURE FOR THE YEAR 2014-2015
INCOME
Of every £1 we spend 93p goes directly to supporting families
Income from Charitable Activities
£324,987
Trusts, Foundations and Grants
£305,379
Individual Donations
£18,969
Fundraising Events and Activities
£10,162
Investment income
Campaigns and National Strategy
£274,693
Providing Information and Support
£265,871
Income Generation
£42,582
Support & Running Costs
£4,371
EXPENDITURE
£5,173
HOW YOUR SUPPORT CAN HELP:
£1
ds a free mation sheet amily carer
£15
£120
sends a volunteer to an event to share information or run workshops
helps the CBF support a family for a year
£31.50
is enough to send a free information DVD to a family
£3000 means we can produce a new information resource
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Find us online www.challengingbehaviour.org.uk
Contact us By phone: 01634 838739 By email: info@thecbf.org.uk
With thanks to: • The Big Lottery Fund, the Henry Smith Charity, Lloyds Foundation, the Department of Health, and all our volunteers, supporters and friends. • Danielle at Pesky Varmint for designing this report. • Pen Mendonça, who created some of the illustrations in this report. Many of these have been drawn during workshops or focus groups held by the CBF, where Pen acts as Group Facilitator. You can find out more about her work at www.penmendonca.com.
pesky varmint www.
.co.uk
• And Keith Wyncoll, and all the other families and carers, who have kindly provided photos to help us in our work. The Challenging Behaviour Foundation The Old Courthouse New Road Avenue Chatham Kent, ME4 6BE. Registered charity no. 1060714.
Pen Mendonça