Read more about The CBF's Community Key Working for Children and Young People pilot project, which aims to employ key workers from a range of backgrounds in the Black Country.
Jump to specific projects mentioned on this page, or scroll down to browse all:
- Getting it right
- ‘New normal’ survey
- Learning disability nursing
- Key worker pilot
- Institute of Health Visiting
- Trauma AID research
- Making positive moves
- CQC- Experts by Experience
- Personalisation project
- Everybody Matters
- PBS Alliance
- Who’s challenging who?
- Transition from residential school to adult social care
- Increasing the quality of health service support for children with intellectual and developmental disabilities
- Intensive Support Teams (IST-ID study)
Getting it right
The CBF was awarded National Lottery funding for 3 years (commencing 2nd September 2019) to help improve both national and local information and support for children and adults with severe learning disabilities and their families. This involves three interconnecting streams of work, building on previous work we have found to be effective.
1) Strategic local input –We are working with one local area per year to help set up local Steering Groups of parent carers and professionals, deliver PBS workshops for family carers and connect family carers with professionals to discuss and plan how to address local issues. More information will be available on our work in West Sussex soon.
2) Sharing information and best practice – We have updated all of our resources and launched this new CBF website.
3) Strategic national work – Funding has been made available to maximise the impact of actions agreed at CB-NSG meetings. After each national meeting, the CBF review the actions and prioritise which to invite to apply for funding.
‘New normal’ survey
The CBF are currently exploring how individuals with learning disabilities, their families, support staff, and those working in the learning disability sector have experienced the challenges, benefits, and new methods of working which have arisen in response to the pandemic and lockdown. Between 9th September and the 1st October 2020, the CBF gathered information from a range of stakeholders about their experiences of the pandemic through a survey. The findings of the survey were considered alongside concurrent work undertaken by researchers from SF-DDARIN, who conducted a series of interviews using ‘word-map’ interview methods with family carers to discuss how they have been impacted by the pandemic. Together, findings were discussed at the Challenging Behaviour National Strategy Group meeting in October, where specific actions were discussed to address some of the key issues raised.
Learning disability nursing
The CBF are working with NHSE&I to improve understanding of the role of Learning Disability Nurses and raise awareness of how they can be accessed by families. Following a series of workshops held in early 2020, the CBF identified the need to improve information available on how families with relatives with severe learning disabilities can access a range of support from Learning Disability Nurses. The CBF produced a LD Nursing resource which was presented at the annual LD Nursing Symposium in December 2020.
The CBF are currently continuing to work with NHSE&I on a piece of work aiming to develop partnership working between learning disability nurses and families. This is involving working with families to collect case studies which highlight where Learning Disability Nurses have significantly affected outcomes for individuals with learning disabilities, and using these case studies in a short training package for learning disability nurses. The training will be co-delivered by a family carer and a Learning Disability Nurse.
Key worker pilot
The CBF are working with Black Country Transforming Care Partnership (TCP) to enable development of a peer support model as part of their Key Working for Children and Young People pilot. This pilot is one of a number funded by NHSE across the country. The CBF and the Council for Disabled Children called for keyworkers in the publications Paving the Way and the Lenehan review, based on the findings of our joint Early Intervention Project.
The aim of the pilot is to employ key workers from a range of backgrounds. These key workers will work as a team supporting each other to provide flexible and timely input to children and young people, families and carers across the Black Country, dependent upon the demand identified through the Black Country dynamic risk register. The CBF and Dudley Voices for Choice will work together to establish peer support for families once they step down from keyworker support.
Institute of Health Visiting
The CBF is undertaking a collaborative project with the Institute of Health Visiting (IHV) to raise health visitors’ awareness of restrictive practices, how to challenge them and how to implement evidence-based alternatives. Following initial surveys and focus groups with families and health visitors and a review of the existing literature, IHV are developing practical resources with a focus on minimising the use of medication; reducing restrictive practices and engaging with the principles of Positive Behaviour Support. These resources will be shared through a series of workshops and webinars which CBF will contribute to and there will be a follow-up evaluation to assess the effectiveness and impact of these resources.
Trauma AID research
University of Swansea, University of Birmingham
This piece of research aims to investigate the effectiveness of treating post-traumatic stress disorder (PTSD) for individuals with learning disabilities by using ‘Eye movement desensitisation and reprogramming’ (EMDR). EMDR treatments have been effective at treating PTSD in general populations, and this research will see whether they are similarly effective (and cost-effective) for individuals with learning disabilities. The study is the first of its kind, and to find out more please click here.
Making positive moves
Hertfordshire Partnerships University NHS Foundation Trust
We interviewed 11 people with learning disabilities about their experiences of moving out of hospital and used what they told us to develop a ‘moving process’ model which demonstrated that people had more restricted and often negative stories about themselves while in hospital. Moving out helped people to feel they were being ‘given a chance’ for new opportunities and their stories about themselves became more positive. Our aim now is to research what helps people with learning disabilities to stay living in the community long-term after leaving hospital. Find out more about the research.
CQC- Experts by Experience
Following the Winterbourne View abuse scandal, the CBF worked with other voluntary organisations for 4 years to promote involvement of Experts By Experience (ExE) within the work of the Care Quality Commission. We were the support organisation for ExEs who are family carers of adult relatives (aged 16 years old or above) with a learning disability who have behaviour described as challenging and/or mental health needs; or family carers of adult relatives (aged 16 years old or above) with profound and multiple learning disabilities.
The CBF was asked to step in at short notice to do this work for the CQC Learning Disability Review (LDR) following the BBC Panorama programme about Winterbourne View. This was important work that identified significant failings in services at both a systemic and individual level. Family carer ExEs identified and reported a range of issues (CBF Learning Disability Review Report) and CBF has and will continue to follow these up for individuals and campaign for systemic change.
This work identified the value of including and supporting family carers with lived experience within the regulation process. Over the 4 years, ExEs moved from being part of inspection teams to also being included in (but not limited to) registration processes and delivering training to inspectors. ExEs with lived experience demonstrated their commitment to improving outcomes for individuals who use services. Though the CBF’s involvement in the project came to an end in 2016, we very much hope that CQC will ensure that this type of work continues, and that this group of ExEs are valued, supported and listened to in the drive for better lives for people with learning disabilities.
People with complex needs are more in need of personalisation than anyone. Yet the CBF was aware they were rarely getting access to personal budgets. And there were many concerns about the quality of service outcomes for them – and this was before the Winterbourne View Panorama programme. So the CBF worked with local authorities from the East Midlands and NHS commissioners and the Department of Health provided some funding so some families from elsewhere could be included.
The CBF’s personalisation project ran between summer 2011 and summer 2012. The aim was to understand how to deliver personalisation for people with learning disabilities whose behaviour is described as challenging.
Personalisation means support and services being geared to a person’s individual sought outcomes which have been identified through person-centred planning. So instead of being placed in any available care home or hospital, a person would perhaps access supported living near their family or other local connections; be involved in the local community or access creative employment opportunities related to their character, abilities or interests.
The main benefits the project sought to achieve were to
- Ensure higher quality outcomes for the 26 individuals involved
- Achieve better outcomes for the same or less money
- Reduce out of area placements, with more people living close to their families
- Improve future commissioning based on the work of the project
- Disseminate learning from the project widely.
The CBF’s personalisation project drew to a close in late summer 2012.
Everybody Matters is the result of an exciting 2015 film project starring Colleen and Shaun, both of whom have learning disabilities and behaviour described as challenging. Shaun and Colleen have experienced poor support and had restricted, unhappy and sometimes unsafe lives in the past. Their stories show that everyone can be supported to live a full and active life in their community.
Following the work of the PBS Academy and others to generate interest in raising standards of Positive Behaviour Support in the UK (through training, workforce development, and other means), a UK PBS Alliancehas been established.
The core purpose of the PBS Alliance is: “To develop a shared understanding of PBS, improve the quality of PBS training, support the implementation of PBS across education, social care and health (including understanding of commissioners and regulators) in order to achieve our vision.”
The vision of the PBS Alliance is for:
- People with learning disabilities and/or autism (and their families and carers) have a good quality of life.
- The workforce is well trained, well led and well supported and has the skills necessary to meet the needs of the people they are supporting within community settings and schools.
Activities of the PBS Alliance include working in partnership with the Challenging Behaviour-National Strategy Group, government departments, regulators and professional bodies in order to develop & implement a national strategy for sector wide implementation Positive Behaviour Support.
Who’s challenging who?
University of Warwick
The research aims to improve the quality of support for adults with learning disabilities who display challenging behaviour by enhancing staff’s understanding of the perspective and experiences of those who have been labelled as challenging. Training has been developed which is delivered by a trainer with a learning disability and a co-trainer who does not have a learning disability. The study will evaluate the effectiveness of the training with 120 residential support services who are being recruited to take part in the training. To find out more click here . The project was led by Professor Richard Hastings
Transition from residential school to adult social care
Tizard Centre, University of Kent
This research looked at where individuals who have transitioned from residential schools are placed. The research involved young people with learning disabilities who transitioned to adult services, family carers, commissioners and residential school staff. The research aims to seek out why some young people with learning disabilities are placed in-or-out-of-area placement following transition from a residential school. This project was led by Professor Peter McGill. For more information please click here.
Increasing the quality of health service support for children with intellectual and developmental disabilities
Tizard Centre, University of Kent
The study links 5 pieces of research together all aiming at achieving good support for children with behaviours that challenge. This research was led by Dr Nick Gore. For more information, please click here.
Intensive Support Teams (IST-ID study)
From 2017-2020, Professor Angela Hassiotis, UCL, led a study to evaluate the cost-effectiveness of intensive support teams for adults with intellectual disabilities whose behaviour can challenge. The study was funded by NIHR and the CBF supported four family carers to participate in the study as a reference group. For more information, please click here.
Early Positive Approaches to Support (E-PAtS) is an 8-week programme for families raising a young child (five years and under) with a learning and/or developmental disability. It was developed by the Tizard Centre with family carers with input from other key stakeholder including CBF.