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NIHR School for Social Care Research Programme
Taking on and taking over: physically disabled young adults and their care and support arrangements (the TOTO project)

Researchers: Caroline Glendinning, Wendy Mitchell, Nicola Moran, Bryony Beresford and Jenni Brooks

Funder: National Institute for Health Research, School for Social Care Research

Duration: July 2012 to April 2014

 

Watch this video produced by the project team with handy tips for practitioners who support physically disabled young adults to manage their care and support arrangements:

 

Background

Personalised adult social care emphasises the aspirations and preferences of service users. Providing opportunities and support for service users to exercise their preferred level of choice and control over their support arrangements is central. This is particularly important for young people as they transfer to adult services, move towards adulthood and seek increasing independence. Transition services aim to improve knowledge, understanding and practitioner practice during the transition years, but it is not clear how far these services prepare young adults for exercising choice and control over their own support once they enter adult social care. Developments in practice/services and research surrounding personalisation within adult social care have, to date, tended to focus on older people and adults with learning disabilities. Little was known about the experiences of physically disabled young adults. This was an important omission because the group includes young adults with complex support needs, including life limiting conditions, but who are nevertheless perhaps most likely to aspire to independent management of their care and support arrangements.

Aims and focus

This study focused on physically disabled young adults and those with chronic, complex or degenerative health conditions (but without learning disabilities). It identified what support was needed and provided for them to achieve their aspirations for choice and control over their support arrangements, including:

  • factors which facilitate choice and control, and the barriers
  • current (and potential) roles of statutory and independent sector adult social care and specialist planning/brokerage services
  • roles of transition support services in preparing young people to exercise choice and control.

Methods

The research was located in four local authorities and involved:

  • interviews with physically disabled young adults and also parents in each authority (the roles of parents in providing on-going support will be considered)
  • interviews/focus groups with front-line authority staff
  • interviews with representatives of specialist support planning organisations.

Policy and practice aims

The study aimed to inform practice and future research on how adult social care and transition support services can help physically disabled young adults to exercise their preferred level of choice and control over their support arrangements as they enter adult social care.

Press coverage

The ToTo video is used in this article on The Guardian's Social Care Network as an example of good ways to get research findings across to non-academic users. 'How good is the social care sector at building an evidence base?' Tuesday 7th July 2015

Publications and presentations


2015

Taking on and taking over: physically disabled young adults and their care and support arrangements
Mitchell, W. , Re-visioning Social Work with Individuals, Collectives and Communities: Social Work Research Conference, Fifth European Conference for Social Work Research, Ljubljana, Slovenia, 22-24 April 2015.
Taking on and taking over: physically disabled young adults and their care and support arrangements. Invited.
Mitchell, W. , NIHR School for Social Care Research Annual Conference, London School of Economics, London, 24 March 2015.
Taking On and Taking Over: Choice and control for physically disabled young adults, 2015
Mitchell, W., Brooks, J., Beresford, B., Moran, N., and Glendinning, C., SSCR Research Findings, NIHR School For Social Care Research.
2014

Taking on and taking over support arrangements: physically disabled young adults
Brooks, J. and Mitchell, W., Community Care Live 2014, London, 21 May 2014.
Taking on and taking over: physically disabled young adults and their care and support arrangements
Brooks, J. and Mitchell, W., Making Research Count Seminar, King's Manor, York, 26 June 2014.
Taking on and taking over and support arrangements: experiences of physically disabled adults, their families and social care practitioners
Mitchell, W. and Brooks, J., Social Policy Confronting Change: Resistance, Resilience and Radicalism, Social Policy Association Annual Conference, University of Sheffield, Sheffield, 14-16 July 2014.

If you require further information about the project, please contact Bryony Beresford email Bryony Beresford

 
 
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