Challenging Behaviour Charter
Members of the CB-NSG have worked together to develop a Challenging Behaviour Charter.
About the Challenging Behaviour National Strategy Group
The Challenging Behaviour – National Strategy Group (CB-NSG) is made up of a range of different experienced stakeholders working together, motivated to drive change forward to make a real difference to the lives of individuals with learning disabilities whose behaviour challenges.
The label ‘challenging behaviour’ can be misused and misunderstood. Instead of encouraging carers and professionals to find effective ways of understanding a person’s behaviour and its underlying causes, it is often used as a diagnostic label, leading to stigmatisation and exclusion. Children and adults whose behaviour challenges are often denied the right to live an ordinary life in their local community and can be placed in institutional settings far away from their homes and families.
With this in mind, the Challenging Behaviour Foundation (CBF) formed the CB-NSG. It is an action focused group that works together to break down the barriers to enable children and adults to get the right support to have a good life.
The CB-NSG focuses on four key principles
- Working in partnership
- Coordinating and sharing good practice
- Being action focused
- Delivering real change
Find information about becoming a CB–NSG member
Co-Producing a Lifelong Action Plan
CB-NSG members, along with other partners, have been working together to co-produce an action plan with actions that policy makers need to take to get support right for children, young people and adults with a learning disability, along with actions that CB-NSG members and other stakeholders are taking to support this. This work puts into practice the four key principles of the CB-NSG.
CB-NSG subgroups
There are several CB-NSG subgroups focusing on specific areas of work. These are:
Campaign families
Campaign Group
Legal Panel
Research Subgroup
Housing Subgroup
Transforming Care Data Group
Transition Subgroup
Positive Behavioural Support Academy
Campaign families
Following the abuse uncovered at Winterbourne View in 2011, Mencap and the CBF invited families to come together to influence and inform the Transforming Care programme and keep the profile of people with learning disabilities whose behaviour challenges high. Since then, the campaign families have met at least once a year. The group have met with government ministers, representatives from CQC and the National Audit Office. In between meetings the families input to campaigning activity via email and telephone. The campaign families group has grown considerably since its inception and now has almost 40 members.
The work of the campaign families group feeds into all areas of the CB-NSG and its sub-groups.
Campaign Group
Members of the Campaign Subgroup meet four times a year to discuss key issues for families and use this to plan campaign strategies. The group also contribute to other areas of policy work throughout the year. The group publishes statements, works with family spokespeople and identifies other campaigns to collaborate with.
A summary of the recent activity of the Campaign Subgroup is included in the CBNSG update paper available here which details updates of all the CB-NSG subgroups and how the work is linked.
Campaign Group membership is reviewed regularly. The current campaign group membership includes CB-NSG members representing national learning disability and autism charities and independent CBF advisors with relevant experience and expertise.
If you would like to find out more about the Campaigns Group, please email nationalstrategygroup@thecbf.org.uk
Legal Panel
The Legal Panel is a subgroup of the CB-NSG, established in 2016, which aims to make better use of the legal framework for enabling families to get the right support for their relatives. It does this by:
- Providing information and initial guidance at an early stage
- Answering legal queries submitted by families
- Identifying strategic legal cases and issues of importance to families of individuals with learning disabilities and/or autistic people, and acting accordingly with support or legal challenges
- Coordinating and sharing legal work done by a range of groups relevant to learning disabilities and/or autism, with this work including involvement in legal cases, developing resources, and offering support and information
The Legal Panel meets regularly and is comprised of representatives of a number of leading law firms, academics and charities. Members work together to improve outcomes for individuals with learning disabilities and/or autistic people and their families when engaging with the legal system.
Legal Panel membership is reviewed regularly. Current membership includes lawyers from Bindmans, Doughty Street, Irwin Mitchell, Leigh Day and Rook Irwin Sweeney; representatives of the CBF, Mencap and NAS, as well as academics from Bath, Cambridge and Leeds Universities.
If you have a relevant legal question, please contact support@thecbf.org.uk who will pass it on to the Legal Panel if appropriate.
Development of a wider legal strategy
The Legal Panel identified the need for a wider legal strategy which ensures that existing legal frameworks work well for people with learning disabilities, autistic people, and their families to protect their rights, ensure they receive appropriate and timely support, and to improve outcomes. To achieve this the Legal Panel along with other key stakeholders meet to consider current issues and challenges facing families. By identifying priority areas, existing work and resources in these areas is mapped and action coordinated jointly, with stakeholders working cooperatively and supporting implementation of agreed work. The legal strategy group last met in 2023 and we are currently planning for the next meeting.
For more information on the legal strategy group, contact nationalstrategygroup@thecbf.org.uk.
Research Subgroup
This subgroup is currently in development, but will have the purpose of co-ordinating, promoting and advocating for research opportunities that will be of benefit to the learning disability field, as well as making existing research accessible to families and professionals. Plans are in place for the identification of membership and terms of reference, and we will update this as progress is made.
Housing Subgroup
Background
The barriers faced by individuals with learning disabilities and autistic individuals when attempting to secure appropriate and specialist accommodation are well known. The impact of this – on both the individuals and on the success of Transforming Care objectives – have been recognised since at least 2012, are well documented in reports by the National Audit Office, Public Accounts Committee, and by a number of other sources. The Building the Right Support (BTRS) Delivery Board have also identified this as an issue to address, with the need to increase the supply of accessible housing as one of the recommendations made in the BTRS Evaluation Interim findings.
The multiple issues around the provision of appropriate housing for people with learning disabilities was discussed at the CB-NSG in May 2021. The discussions highlighted the difficulties individuals with learning disabilities and their families face to access good quality information about housing options and to access support to get a house. The discussions at the CB-NSG concluded in the need for a CB-NSG Housing Subgroup to bring together individuals with housing expertise, to work collaboratively on identifying the strategic issues in housing provision.
Subgroup purpose
Members of the CB-NSG Housing Subgroup will work collaboratively on identifying and addressing the strategic issues in housing provision. These housing issues include:
- the rate of Local Housing Allowance
- the lack of investment in supplying specialist accommodation
- the restrictive sign-off process in housing association funding
- the complex coordination that is needed between assessing needs and financing
- the lack of an overall strategy for housing at a local, regional and national level
Short-term and Long-term outcomes for the subgroup:
Short term:
- Providing and pooling expertise and a “first point of reference” about securing housing for people seeking discharge from mental health units (or to prevent admission).
- Collating, mapping and improving accessibility of information and support for families looking to secure housing (and identifying and addressing any gaps).
- Highlighting the need to plan early and considering a range of options to access appropriate housing.
Long term:
- Influencing key stakeholders regarding the strategic issues that must be addressed- and the need for a “joined up” approach to a simple housing pathway
- Ensuring that early consideration of housing needs is prioritised and implemented, e.g., ensuring people get onto the housing register early on with their needs appropriately identified
For more housing resources go to Housing, Education, Leisure
For more information on the Housing Subgroup please contact: nationalstrategygroup@thecbf.org.uk.
Transforming Care Data Group
The Data Group was formed due to concerns that data was not being adequately analysed and used to inform activities in the Transforming Care programme. Members of the data group are drawn from CB NSG core and associate members, as well as individuals with particular knowledge, expertise and interest in this data work. Membership includes academic researchers, commissioners, and representatives from national charities.
The Data Group meets quarterly to consider the relevant data available regarding children, young people and adults with learning disabilities who display behaviour described as challenging, and the support and services available to them. The work includes:
- Mapping data sources & data collections
- Identifying conflicting data
- Identifying gaps in data
- Sourcing data (e.g. through Freedom Of Information requests)
- Analysing trends in data and the implications for the Transforming Care programme
- Raising concerns about data with appropriate individuals and organisations as agreed by the group
- Sharing information about data for various purposes, as agreed by the group – including the production of reports, briefing papers etc.
On a monthly basis, members of the Data Group discuss current issues in the NHS Digital data for children, young people and adults and jointly produce monthly infographics and press statements.
A summary of the recent activity of the data subgroup is included in the CBNSG update paper available here which details updates of all the CBNSG subgroups and how the work is linked.
If you would like to find out more about the Data subgroup, please get in touch with nationalstrategygroup@thecbf.org.uk
Transition Subgroup
The Transition sub-group was established in July 2024 and is formed of family carers and professionals from charities, education, health, and social care. The group has identified issues faced by young people with learning disabilities in transitioning from children to adult services and co-produced the actions that are needed to ensure young people and their families experience a positive transition. Over the next year we plan to share real life experiences to highlight the “cliff” edge that many young people face as they transition to adulthood and work collaboratively to improve transition to adulthood. We will also look to identify good practice examples to share best practice and encourage the development of improved support.
If you would like to find out more, please email: nationalstrategygroup@thecbf.org.uk
Positive Behavioural Support Academy
Visit the Positive Behavioural Support Academy
The sub-groups, attended by CB-NSG members with expertise, experience and interest in the relevant area, meet around four times a year to identify the current issues and actions to address these. This work is shared with the CB-NSG steering group who strategically co-ordinate the activity and actions of the subgroups and this is fed-back to all CB-NSG members.
CB-NSG members are welcome to apply to join one or more CB-NSG subgroups. Please do get in touch if you are interested in joining or contributing to the work of the CB-NSG through one of the subgroups.
