Achievements and Future Directions

First five-year period: 2002-2007 

Over the seven years since 2002, when The Health Foundation awarded a grant to establish The Health Foundation Chair in Learning Disabilities at the University of Cambridge, we have achieved the following:  

1. We have established the interdisciplinary Cambridge Intellectual and Developmental Disabilities Research Group (CIDDRG), based in the Department of Psychiatry, University of Cambridge, and led by senior staff in psychiatry, psychology, and sociology. We also established a senior post in molecular biology at the Babraham Institute near Cambridge. The holder of this post has moved to the University of Cardiff but remains closely linked to the CIDDRG. Over this period, we have established academic links with other departments at the University of Cambridge and with other universities, both in the above disciplines and a range of other disciplines, including genetics, geography, computer science, law, ethics, and philosophy.  

2. We are founder members of the Centre for Participation together with Speaking Up, the Faculty of Education at the University of Cambridge, the Regional Valuing People Support Team, and local statutory services. The aim of this Centre is to support research with and by people with intellectual disabilities and ensure that the findings are disseminated to those whom they will benefit. We have also supported the voluntary sector, working with Respond, Speaking Up, the Home Farm Trust, the Down’s Syndrome Association, the Prader-Willi Syndrome Association, the Tuberous Sclerosis Association, local and national Mencap, and Umbrella Autism. The CIDDRG is a group member of the British Institute of Learning Disabilities, as well as the International Association for the Scientific Study of Intellectual Disabilities (IASSID). We have hosted and actively participated in research meetings of IASSID and of other organisations, concerned with the well-being of people with intellectual disabilities.  

3. We have undertaken major grant-funded research projects under four broad themes relating to intellectual and developmental disabilities:  biologically orientated ‘syndrome-based’ research, neuropsychiatry and autism spectrum conditions, clinico-legal studies, and citizenship. As other material on the website indicates, we have used a broad range of approaches and methodologies, made possible by the range and extent of expertise available both in the CIDDRG, and through our collaborations. These projects have, in part, been conceptual but have also been practical, aiming to evaluate and/or inform policy and practice relating to legislation, service provision, clinical assessment, treatment and support, and advocacy. 

4. We have successfully obtained funding for postgraduates from a range of backgrounds, including psychiatry, psychology, geography, social anthropology, and social work to carry out studies relating to people with intellectual and developmental disabilities. So far, nine students have been awarded PhD degrees, with four other students at earlier stages of their doctoral studies.  

5. Our research has directly informed policy and practice through the submission of evidence to Government Departments and by informing good practice guidance. Our work in this area has included submissions relating to the Mental Capacity Act 2005 and its Code of Practice, the pilot Independent Mental Capacity Advocates (IMCAs) programme as it has developed, the Parliamentary enquiry into the human rights of people with learning disabilities, and the consultation on ‘No Secrets’ (relating to the abuse of vulnerable adults). Members of the group have also contributed to the development and publication of assessments for establishing financial decision-making capacity (published by BILD), dementia in people with Down’s syndrome (CAMDEX-DS, published by CUP), best practice in the care of people with Prader-Willi Syndrome, and best practice in the care of people with intellectual disabilities and dementia (published jointly by the RC Psychiatry and the BPsS).

6. Our group led the development of one of the research themes: ‘Mental health and psychological well-being among adults with long-term conditions’  in the CLAHRC (Collaborations for Leadership in Applied Health Research & Care) for Cambridgeshire & Peterborough, one of the developments funded by the NIHR to support health service research. The local CLAHRC is hosted by Cambridgeshire and Peterborough Foundation Trust and is a partnership with the Department of Psychiatry  and other Departments and groups within the University of Cambridge (the Engineering Design Centre, the Judge Business School, and the Institute of Public Health), and local statutory agencies (such as NHS Cambridgeshire and Cambridgeshire County Council). Our theme, the ‘adult’ theme, which is one of three clinical research themes covering the lifespan, focuses on adults with intellectual and developmental conditions or acquired brain injury, and is led by Tony Holland, with other members of our group and in partnership with the Oliver Zangwill Centre for Neuropsychological Rehabilitation.  In addition to the main project, the ‘adult’ theme supports other clinical research aiming to improve the lives of people with long-term conditions.

Second five-year period: 2007 to 2012 

For the second five-year period, 2007 to 2012, we seek to ensure the long-term future of the CIDDRG and to establish ourselves as an international centre for the study of intellectual and developmental disabilities that can daw upon the expertise that presently exists in the CIDDRG and at the University of Cambridge and to expand and to develop further links with other universities, statutory services and voluntary associations, both in the UK and internationally. We propose to develop our work further in the following ways: 

1. To obtain long-term funding to support the senior academic posts and to establish PhD studentships that enable research in the field of intellectual and developmental disabilities to be carried out from different disciplinary perspectives. These two developments are crucial as they will broaden the range of expertise available to support research in intellectual and developmental disabilities at the University of Cambridge, and, of equal importance, will provide the means to engage undergraduates and postgraduates in this area. Through these activities, we will support the next generation of academic researchers, academic clinicians, and policy-makers, in the UK and elsewhere. 
   
   
2. Within the framework of the CLAHRC, to develop service-related research that focuses on gaining a greater understanding of the care pathways of men and women with intellectual and developmental disabilities, or acquired brain injuries, and the complex interdisciplinary and interagency arrangements that are required to provide ‘good practice’ in services that support people with these long-term conditions. 
   
   
3. To continue to develop and support basic science studies in parallel with  clinical studies, which investigate the brain mechanisms that underpin some of the behavioural and psychiatric disorders that have been found to be associated with specific genetically determined syndromes. To do this we wish to develop and maintain our links with major departments engaged in this research, such as those at Cardiff University and the Laboratory of Molecular Biology at the University of Cambridge.  
   
   
4. To further develop our research networks including, in collaboration with colleagues and other organisations, to secure the long-term future for the Centre for Participation to enable us to contribute to, and develop, larger-scale local research projects in partnership with health and social care organisations and people with intellectual and developmental disabilities themselves, and their carers. For some projects, involving participants with a rare condition associated with intellectual disabilities, it is essential to arrange networks that are national, or even international; we aim to continue to support such developments.  
   
   
5. To further develop our interdisciplinary and collaborative research projects with academic colleagues at other universities and ensure that the findings are disseminated so that they inform policy and practice. Through such collaborations, we also aim to enhance our skills in some of the innovative technologies and methodologies to ensure that the best approaches, in the physical, behavioural, cognitive, and social sciences are applied to research issues to benefit people with intellectual and developmental disabilities. To achieve this requires research and development funding, and some additional training, and also an increase in the administrative support available to the CIDDRG.  
   
   
6. In collaboration with European partners, the IASSID, and other organisations, to develop existing links within Europe and also those that  we have begun to form with others, in less privileged parts of the world. Our aim is to contribute to understanding the needs of, and improving the lives of, people with intellectual and other developmental disabilities across different countries, different cultures, and different economic conditions.