Title: Study of Participation of Children with Cerebral Palsy Living in Europe
Author: Newcastle University (UK Co-ordinating Centre)
Summary: Research study which aims to discover the best ways of promoting the quality of life and participation of children with cerebral palsy in Europe.

Title: Improving Health and Lives
Author: University of Hertfordshire
Summary: The Improving Health and Lives Learning Disability Public Health Observatory is a three year Department of Health funded project, set up in response to a recommendation in Healthcare for All, the report of the independent inquiry into access to healthcare for people with learning disabilities by Sir Jonathan Michael.

Title: How can health services contribute most effectively to facilitating successful transition of young people with complex health needs from childhood to adulthood?
Summary: Northumbria Healthcare NHS Foundation Trust and Newcastle University have developed a research programme to answer this question. The programme involves further NHS Trusts and the voluntary sector.

2014

Title: Special Educational Needs: preparing for the future Good transition health model from southampton
Author: Local Government Ombudsman
Summary: This report urges that children with SEN, and their families, must be treated fairly and receive the support to which they are entitled. It highlights a number of stories from the Local Government Ombudsman’s complaints where pupils are being unlawfully excluded from school, being denied specialist support, and many are having their education opportunities limited because of long delays.

Title: Youth Index 2014
Author: Prince's Trust
Summary: The sixth annual Youth Index. It gauges young people’s wellbeing across a range of areas from family life to physical health.

2013

Title: Learning Disabilities Census Report - England, 30th of September 2013
Author: Health and Social Care Information Centre
Summary: This report presents initial findings from the 2013 Learning Disability Census. Data were collected on behalf of the Department of Health, the Care Quality Commission, Public Health England and NHS England.

Title: Supporting health transitions for young people with life-limiting conditions: researching evidence of positive practice
Author: Together for Short Lives
Summary: The project involved interviews with young adults, parents and health professionals. What is clear from the findings of the project is that small changes in practice can make a big difference to young adults’ experiences as health services users and day-to-day life with a significant, potentially life-limiting, health condition.

Title: Disabled People’s Lifestyle Survey September 2013
Author: English Federation of Disability Sport
Summary: Understanding disabled people’s lifestyles in relation to sport. Defining current participation, preferences and engagement to provide more attractive offers in sport.

Title: Child health in the new NHS: Results of a survey
Author: The National Children's Bureau and the NHS Confederation
Summary: An independent survey of those directly involved in the commissioning, management delivery and the holding to account of health and related services. The aim was to monitor the impact of the health reforms on provision for children and young people.

Title: Picking up the pieces
Author: Association for Young People's Health
Summary: Results of a survey on the state of young people’s advice, counselling and support services.

Title: Overlooked and forgotten: A review of how well children and young people’s mental health is being prioritised in the current commissioning landscape
Author: Children and Young People's Mental Health Coalition
Summary: This report offers support and recommendations to health and wellbeing boards on how they can prioritise and address children and young people’s mental health.

Title: No young person with cancer left out: The impact of cancer on young people's education, employment and training
Author: Clic Sargent
Summary: Clic Sargent spoke to 205 young people aged 16 to 24 about how cancer had affected them, using a survey, focus groups and face-to-face interviews.

Title: My Life: Growing up and living with Ataxia-Telangiectasia: young people's and young adults' experiences
Author: Beresford, B., Moran, N. and Clarke, S.
Summary: The A-T Society was seeking to understand more about the lives of young people, their priorities and aspirations, and what got in the way of them living the lives that they want to live. The Society also wanted to know young people's views about the support and services it provided to young people with A-T and their families.The key purpose of the project was to hear and give a voice to, the experiences of young people with A-T. Their views and experiences are prioritised in this report.

Title: Disabled People’s Lifestyle Survey
Author: English Federation of Disability Sport
Summary: Understanding disabled people’s lifestyles in relation to sport. Defining current participation, preferences and engagement to provide more attractive offers in sport.

Title: University Challenge 2013: The Trailblazers’ Higher Education report
Author: Muscular Dystrophy's Trailblazers Young Campaigners’ Network
Summary: Trailblazers contacted the top one hundred universities in the UK and questioned them on their accessibility.

Title: Helping the inbetweeners: Ensuring careers advice improves the options for all young people
Author: Barnardo's
Summary: This report on the state of England’s careers provision, reveals that these services are not reaching young people – especially those ‘in between’.

Title: “Always Someone Else’s Problem"
Author: Children’s Commissioner
Summary: Office of the Children’s Commissioner’s Report on illegal exclusions.

Title: Disabled children illegally excluded from school every week
Author: Contact A Family
Summary: Contact A Family surveyed over 400 families of children in England and Wales with disabilities or additional needs, and found disabled children are routinely illegally excluded from school with a devastating impact on their education and mental health.

Title: Critical issues in the provision of youth work for young disabled people
Author: Ofstead
Summary: Ofstead has published the results of a survey on the access young disabled people have to youth work and its impact on their lives. Inspectors sampled 18 visits to local authorities, charities and voluntary and community organisations who were all promoting various forms of youth work. The key findings from the report are broken into three separate resources: the survey findings; discussion materials in the four critical issues identified and good practice case studies.

2012

Title: Researching the Lives of Disabled Children and Young People
Authors: Children & Society
Summary: In 2012, the Children & Society journal ran a special issue looking at research on the lives of disabled children and young people.

Title: Developing the transition pathway for young people with learning disabilities: data collection and analysis report
Author: The London Joint Improvement Partnership (JIP) Transition Project
Summary: The transfer of post 16 education funding to local authorities and the introduction of personalised budgets add both opportunities and complexities to the transition process.

Title: Hackney local account 2012
Author: Hackney Council
Summary: Local accounts are a type of annual report that tell residents how well local adult social care services are run. This is Hackney Council’s latest local account. It reports on the performance of their adult social care services between April 2011 and March 2012.

Title: Disability in the medieval period 1050-1485
Author: English Heritage
Summary: This website describes the life of disabled people in the medieval period. It also explains how monasteries and convents cared for sick and disabled people and became the hospitals we use today.

Title: The Better Communication Research Programme: improving provision for children and young people with speech, language and communication needs
Author: Geoff Lindsay, Julie Dockrell, James Law and Sue Roulstone
Summary: The Better Communication Research Programme (BCRP) was commissioned as part of the Better Communication Action Plan, the government’s response to the Bercow review of services for children and young people with speech, language and communication needs. This report presents six major recommendations, each of which is discussed with reference to the research evidence presented in the thematic and technical reports.

Title: Learning from Practice Review
Author: BOND (Better Outcomes, New Delivery) and YoungMinds
Summary: This report explores the nature of the relationship between the voluntary and community sector and commissioners (schools, NHS and local authorities), with a focus on the delivery of early intervention mental health services for children and young people.

Title: Removing barriers, promoting independence
Author: The All Party Parliamentary Group for Young Disabled People
Summary: This report looks at the issues affecting young disabled people in the UK, including the barriers young disabled people face in social situations such as transport, employment and higher education.

Title: No child with cancer left out
Author: CLIC Sargent
Summary: This report looks at the impact of cancer on children of primary school age.

Title: Improving outcomes for disabled children by integrating early support and prevention services: Luton Borough Council
Author: Ofsted
Summary: Luton’s services for disabled children and their families bring together practice across health, social care and education services, alongside innovative short break and early support provision. The development of an extensive range of integrated early support and prevention services is improving outcomes for disabled children and preventing situations deteriorating so that child protection or looked after services become necessary.

Title: Making Best Interests Decisions: People and Processes
Author: Norah Fry Research Centre at Bristol University, University of Bradford and Mental Health Foundation.
Summary: The Best Interests Decisions Study was the first large-scale national research to find out about professional practices in best interests decisions made under the Mental Capacity Act 2005. The study was funded by the Department of Health and was completed in 2011.

Title: Doing services differently: local innovations for disabled people
Author: nef and Scope
Summary: This report presents examples of innovations developed by local authorities and providers that show how services can improve disabled people’s lives and save money.

Title: Nobody made the connection: the incidence of neurodisability in young people who offend
Author: The Children's Commissioner for England
Summary: This report draws attention to the large numbers of young people in children's prison's in England who have neurodevelopmental difficulties, such as brain injuries, that could result in communication difficulties, cognitive delays, learning difficulties and emotional and behavioural problems.

Title: Changes to the funding of Special Educational Needs and Disability (SEND) provision: views of lead members
Author: Local Government Association
Summary: This research looked at the proposed introduction of the Education, Health and Care Plan and personal budgets for children and young people with SEND, consulting nineteen lead members through round table events and individual interviews.

Title: Unlocking key working: information and transparency for families with disabled children
Author: Every Disabled Child Matters
Summary: Report on key working support available to families with disabled children.

Title: The Phoenix Project, Isle of Whight, Quality of Life
Author: University of Hertfordshire
Summary: This article reports on the results of an empirical study which involved a ‘Quality of Life’ audit of thirty-nine adults with profound learning difficulties who were resettled from hospital accommodation to supported living in the community.

Title: Transition to adult services and adulthood for young people with autistic spectrum conditions
Authors: Bryony Beresford, Nicole Moran, Patricia Sloper, Wendy Mitchell, Linda Cusworth, Katharine Weston, Gemma Spiers and Jennifer Beecham, University of York.
Summary: This study provides in-depth qualitative data on the support provided for young people with ASC and their families in five case study areas.

Title: Peope with Learning Disabilities in England
Author: Centre for Disability Research
Summary: The aim of this report is to summarise information that is available from nationally representative data sources on the life experiences and services used by people with learning disabilities in England.

Title: Support for families with disabled children
Author: Care Quality Commission
Summary: This review looked at the support available for families with children that have a disability.

Title: Transition Affects Carers Too
Author: Thurrock Lifestyle Solutions CIC
Summary: Carers of young people with learning disabilities are faced with difficult decisions when their child leaves full time education. This report discusses a project which enabled a group of Carers to move on in their thinking and plan positive futures for their children leaving school.

Title: Families and Personalisation
Authors: NDTi and Dimensions
Summary: Research into how families are being involved in the personalisation process.

Title: Work In Progress
Authors: Cornwall People First
Summary: This research project investigated how Supported Employment Agencies can best support people with a learning disability into employment. There is also a DVD illustrating good and bad employment support.

Title: Don't Let Me Down: Ensuring a good transition for young people with palliative care needs
Authors: Marie Curie Cancer Care and Together for Short Lives
Summary: This research draws on the experiences and views of young people with palliative care needs, their families and their carers. This report gives voice to these experiences and seeks to set out how we can improve the services available to young people and their families and improve the co-ordination, integration and communication of those services.

Title: People not processes: the future of personalisation and independent living
Authors: social care institute for excellence (scie)
Summary: This is a report of two seminars which brought together service users, carers, social care practitioners and policy makers to discuss the future of personalisation at a time of limited resources.

Title: Over-looked Communities, Over-due Change: how services can better support BME disabled people
Authors: SCOPE
Summary: This report presents new, wide-ranging evidence about disabled people from black and minority ethnic (BME) backgrounds and recommends how policy-makers, local authority commissioners, and service providers can improve BME disabled people’s access to services.

Title: Lost in transition? The changing labour market and young people not in employment, education or training
Authors: Paul Sissons and Katy Jones
Summary: The number of young people who are not in employment, education or training (NEET) has been rising for the last decade. This report examines how the characteristics of NEETs have changed over this period, and how longer-term labour market change has affected the transition for young people from education into employment.

Title: Special Educational Needs School Consultation Report
Authors: Helen Bacon
Summary: This report is based on a a series of workshops with young people who attend Special Educational Needs (SEN) schools across Norfolk.

Title: Caring for our future: What service users say
Authors: Peter Beresford and Eamon Andrews
Summary: This report shares the results of a consultation held in November 2011 on social care reform.

Title: Hidden Talents: A statistical overview of the participation patterns of young people aged 16-24
Authors: Tim Allen, Palak Mehta and Simon Rutt
Summary: This report reviews available statistics, data and commentary to establish what can be reasonably deduced to inform policy in response to young people aged 16 – 24 years who are not in employment, education or training (NEET).

Title: Managing Behaviour and Sleep Problems in Disabled Children: An investigation into the effectiveness and costs of parent-training interventions
Author: Beresford, B., Stuttard, L., Clarke, S., Maddison, J. and Beecham J.
Summary: The aims of this study were to evaluate the effectiveness of four different parent-training interventions for parents of disabled children with sleep problems.

2011

Title: The Stage Life: promoting the inclusion of young people through participatory arts
Author: Theodore Stickley, Brian Crosbie, Ada Hui
Summary: Research report on The Stage Life. A programme which aimed to build the community arts capacity for young adults with learning disabilities by introducing approximately fifty people to participatory arts activities over a period of 2 years.

Title: Just Normal Young People: Supporting young people living with HIV in their transition to adulthood
Author: Emily Hamblin
Summary: A report presenting experiences and perspectives expressed by young people, practitioners and parents/carers in relation to the transition of young people living with HIV into adult life and adult-oriented services. The report includes policy and practice recommendations aimed at improving transition for young people. A version for young people is also available to download.

Title: Transition: Parent Consultation Findings 2011
Authors: Shropshire Parent and Carer Council
Summary: This report explores the parent carer experience of transition in Shropshire.

Title: Transition In Suffolk - A research project
Authors: Beth Tartleton and Sue Porter
Summary: Local research on the experience of transition to adulthood of 8 disabled young people from Suffolk.

Title: Young people with HIV and the transition from children's to adults services
Author: Emily Hamblin
Summary: A literature review exploring what has been learnt about transition for young people living with HIV and other chronic health conditions to date.

Title: Young people with life-limiting conditions: transition to adulthood
Authors: Marsh, S., Cameron, M., Duggan, M., Rodrigues, J. with Eisenstadt, N., Iskander, R. and Stone, J.
Summary: Marie Curie Cancer Care’s Young People and Transition project aims to improve services for young people with life-limiting conditions as they move into adulthood.

Title: How disabled young people with degenerative conditions and their parents make choices about care and services
Authors: Mitchell, W., Maddison, J. and Beresford, B.
Summary: This study looks at the realities of choice-making processes within families, exploring the respective roles and experiences of young people and their parents.

2010

Title: Teenage worlds, different voices: an ethnographic study of identity and the lifeworlds of disabled teenagers who use Augmentative and Alternative Communication
Authors: Mary Wickenden, The University of Sheffield.
Summary: This study explores identity and the lifeworlds of disabled teenagers who use Augmentative and Alternative Communication (AAC). Drawing on theoretical influences from Childhood Studies, Disability Studies and Social Anthropology it uses ethnographic methods, to investigate the lives of nine key participants aged 10-18 years.

Title: Models of Multi-agency Services for Transition to Adult Services for Disabled Young People and Those with Complex Health Needs: Impact and costs (SPRU, 2010)
Authors: P. Sloper, J. Beecham, S. Clarke, A. Franklin, N. Moran and L. Cusworth, University of York.
Summary: Many multi-agency transition services for disabled young people are at an early stage in their development, and there is considerable variability in how they are being implemented. This study provides information on aspects of such services that are likely to provide a more positive impact for young people and families.

Title: Process, outcome and experience of transition from child to adult mental healthcare: multiperspective study
Authors: Swaran P. Singh, Moli Paul, Tamsin Ford, Tami Kramer, Susan McLaren, Kimberly Hovish, Zoebia Islam, Ruth Belling and Sarah White, The British Journal of Psychiatry.
Summary: This paper evaluates the process, outcomes and carer experience of transition from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS).

2009

Title: Personalised Transition: innovations in health, education and support
Author: Alison Cowen
Summary: Personalised Transition summarises a new way of organising support to disabled young people and their families.

Title: Out of Sight, out of Mind? Transition for Young People with Learning Difficulties in Out-of-Area Residential Special Schools and Colleges
Authors: David Abbott and Pauline Heslop, British Journal of Special Education.
Summary: Young people with learning difficulties who go to residential special schools and colleges are highly vulnerable, often living a long way from home. Transition towards adulthood--from school to college, or college and beyond--requires careful planning and support for both young people and their families. Despite national policy and guidance in this area, this article suggests that young people with learning difficulties in out-of-area placements are being failed in terms of transition education and face huge uncertainty and very limited choices.

Title: Transitions to adult services by disabled young people leaving out of authority residential schools
Authors: B. Beresford and J. Cavet, University of York
Summary: Evidence suggests that poor transition planning and outcomes feature too often in the transitions of disabled young people from children's to adult services. Moreover the transitions of disabled young people leaving out of authority residential school placements can be even more problematic than the transitions of young people living with their families and attending local schools.

2008

Title: As long as it takes: a new politics for children
Authors: Action for Children
Summary: This report, by Action for Children, examines 21 years of policy affecting vulnerable children and young people in the UK.

2007

Title: Help to Move On: Transition pathways for young people with learning difficulties in residential schools and colleges
Authors: Pauline Heslop, David Abbott, Lisa Johnson and Robina Mallet, Norah Fry Research Centre.
Summary: The project aimed to explore, promote and support the implementation of better pathways and options for young people at transition to adulthood. The particular focus of the project was young people with learning difficulties living away from home at an ‘out-of-area’ residential school or college.

Title: The transition of young adults with disability: A study of the effectiveness of inter-agency transitional planning
Authors: Tony O’Sullivan
Summary: This study has looked at the wide range of disability at transition and has included students with and without statements of special educational needs. It set out to study the effectiveness of inter-agency transition planning in the district context of the London Boroughs of Lewisham and Southwark and in the light of new systems introduced in the Department of Education and Employment's (DfEE) Code of Practice on special educational needs.

Title: Transition experiences of disabled young people
Authors: Linda Piggott and Ann-Marie Houghton, International Journal of Lifelong Education
Summary: This paper outlines the changing employment climate and shift in attitudes towards disabled people who are expected to become economically active in order to fulfil their role as responsible citizens.

Title: No One Knows: Offenders with Learning Difficulties and Learning Disabilities
Authors: Prison Reform Trust
Summary: A briefing paper by the Prison Reform Trust (2007) that highlights the fact that many offenders have learning difficulties or learning disabilities that interfere with their ability to cope with the criminal justice system.

2006

Title: The RITE transition: the only way forward
Authors: ACE Centre Oxford and the DARE Foundation
Summary: The RITE transition: the only way forward highlights some of the barriers and hurdles many young disabled people face when trying to make the transition from school through college and university to employment and independence in adulthood. It explores their hopes, aspirations, concerns and difficulties.

Title: Growing Up Ready for Emerging Adulthood: An evidence base for professionals involved in transitional care for young people with chronic illness and/or disabilities
Authors: Janet E. McDonagh, University of Birmingham and Birmingham Children’s Hospital NHS Trust.
Summary: This document is based on a presentation given by the author at a major national conference on the 23rd March 2006 convened by the Department of Health, the Royal Colleges and the Department for Skills and Education. The aim of the conference was to raise awareness of this area and empower existing local champions of transition to support further development of this vital and important area with respect to clinical service provision, education and training in addition to research.

2005

Title: Post-16 Transitions: a Longitudinal Study of Young People with Special Educational Needs: (Wave Three)
Authors: Jane Aston, Sara Dewson, George Loukas and Professor Alan Dyson, Institute for Employment Studies.
Summary: This is the third wave of longitudinal research with young people with special educational needs (SEN) to record and track their progress as they move from compulsory schooling to early adulthood.

Title: The education and employment of disabled young people: Frustrated Ambition
Authors: Tania Burchardt, Joseph Rowntree Foundation.
Summary: This report is about the transitions young people make from compulsory education to early adult life, comparing the experiences of disabled and non-disabled young people.

Title: Changes and choices: finding out what information young people with learning disabilities, their parents and supporters need at transition
Authors: Beth Tarleton and Linda Ward, British Journal of Learning Disabilities.
Summary: This article provides an overview of the methods and findings of a project, commissioned by the Social Care Institute for Excellence, to explore the information needs of young people with learning disabilities, their families and supporters at transition.

Title: Voices and choices: how education influences the career choices of young disabled people
Authors: Sonali Shah, Journal of Research in Special Educational Needs
Summary: The changing British society with new commitments to educational inclusion for disabled people should mean increased individual freedom of choice and greater chance of participation. However, juggling this with the continuing emphasis on education for the economy brings the danger of new forms of social exclusion of those who do have different needs and require additional support to take advantage of opportunities and make informed decisions about their professional futures. This research strives to give a voice to young disabled people, informing policy concerned with young people, education and transitions to work.

2004

Title: Good practices that address continuity during transition from child to adult care: synthesis of the evidence
Authors: A. White, A. Forbes, R. Ullman, S. Lewis, L. Mathes and P. Griffiths, Child: Care, Health and Development.
Summary: Effective transition to adult services is required by an increasing number of children with ongoing needs. The aim of this report is to identify practices that promote continuity at transition between child and adult services.

Title: Portfolio of health advice for young people with disabilities transferring to adult care
Authors: M. J. Tan and V. J. Kilmach, Child: Care, Health and Development
Summary: The transition from paediatric to adult services for young people with complex disabilities is fraught with anxieties for families. To facilitate the transition process a portfolio comprising reports from parents, paediatricians and therapists was collected and given to the young person and family on leaving school. The aim of this report was to evaluate the young people and their parents’ views of the usefulness of portfolios in providing comprehensive picture of their health needs.

2003

Title: Scotland’s young disabled people: their housing experiences, aspirations and beliefs
Authors: Jo Dean, Housing Studies Association.
Summary: This paper explores the housing careers and aspirations of disabled young people in Scotland, based on interviews with 30 people with learning disabilities and physical disability.

Title: Future aspirations of students with severe learning disabilities and of their parents on leaving special schooling
Authors: Marisa Smyth and Roy McConkey, British Journal of Learning Disabilities
Summary: The majority of school-leavers over 2 years from two special schools in Belfast were individually interviewed (n = 34) as were their parents (n = 37). It is argued that it is not just the availability of services that need to increase in order to meet the aspirations of the young people and their parents; major changes are also needed in their form and function.

Title: Transition planning: how well does it work for young people with learning disabilities and their families?
Authors: Linda Ward, Robina Mallett, Pauline Heslop and Ken Simons, British Journal of Special Education
Summary: The legislation and guidance require that transition planning takes place for all children with a Statement of Special Educational Needs. The research reported here was undertaken to find out how well this legislation and guidance works in practice from the perspective of young people with learning disabilities and their families.

2002

Title: 'Am I the same?' Decision-making processes during the transition from school
Authors: Lesley Dee, Journal of Research in Special Educational Needs
Summary: This paper describes the kinds of decisions that young people with special educational needs and their families have to make as the time to leave school approaches.

Title: Where have they gone? Issues in transition and progression for special school leavers
Authors: Alan Dyson, Nick Meagher and Elaine Robson, Journal of Research in Special Educational Needs
Summary: This paper reports on semi-structured interviews with 76 former special school students now aged between 16 and 25.

2001

Title: Disability and Transition to Adulthood; Achieving independent living
Authors: Nicola Hendey and Gillian Pascall, Joseph Rowntree Foundation.
Summary: Research points to difficulties in achieving adult goals such as employment, and to inadequate support as young people ‘hurtle into a void’ (Morris, 1999a). But some young adults with significant impairments achieve independent living, and this study centres on these achievements. It asks young people who have employment and independent households, or one of them, what has enabled their transition to independent living as adults.

2. Books

2012

Title: Making it Work: Embedding a supported employment approach in vocational education and training for people with learning difficulties
Authors: Yola Jacobsen
Summary: This book provides information about the supported employment process and how this can be embedded in vocational training and courses for people with learning difficulties.

2009

Title: Transitions to Adult Services by Disabled Young People Leaving Out of Authority Residential Schools
Authors: B. Beresford and J. Cavet, University of York.

3. PhDs

1999

Title: Young adults and disability: transition to independent living?
Author: Nicola Hendey
Summary: The study aims to explore disabled young people's concerns about independent living, and how they view the source of that independence.