Taking on and taking over: physically disabled young adults and their care and support arrangements (the TOTO project)

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.

SPRU research team

Related links

Publications and presentations from the project are available from the York Research Database

TOTO project poster (PDF  , 830kb)

TOTO project video on YouTube

Introduction

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:

Watch our video on YouTube

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

Additional information

Related links

Publications and presentations from the project are available from the York Research Database

TOTO project poster (PDF  , 830kb)

TOTO project video on YouTube