School for Social Care Research Improving the evidence base for adult social care practice Taking On and Taking Over: Physically Disabled Young Adults and their Care and Support Arrangements Wendy Mitchell and Jenni Brooks SPRU, University of York MRC Workshop (26/6/2014)

School for Social Care Research Background  Personalisation policy – increasing choice and control  Past research – focused on older people and people with learning disabilities  Physically disabled young adults:  Assuming greater responsibility a realistic aspiration  Problems faced – minority group within adult social care, relative immaturity and lack of experience 2

School for Social Care Research Study Aims Identify what support physically disabled young adults (aged 18-30) need to achieve their preferred level of control over their support arrangements:  Factors which facilitate control and the barriers  Role of statutory and independent sector services  Role of transition services in preparing young adults 3

School for Social Care Research Study Sample and Methods 4 GroupInterviewsLA1LA2LA3LA4OtherTotal Senior Managers (physical disability and transition services) Telephone4454n/a17 Front-line practitioners (physical disability and transition services) Focus groups 38116n/a28 Specialist voluntary organisations Telephone2110n/a4 Physically disabled young adults Face-to-face Parents of physically disabled young adults Telephone Total

School for Social Care Research EXPERIENCES OF PROFESSIONALS 5

School for Social Care Research Limited Experience of Working with Young Adults  Small numbers – hard to say how many  Changes in team structure  Few specialist organisations  Some professionals assume issues are the same as:  Other young people  Other disabled people 6

School for Social Care Research Lack of Life Experience and Skills  Young adults need more time to plan  Gradual approach to managing a budget  Give information more than once 7 Information helps young people understand about what their choices are, and how you deliver that is important too - we're constantly talking about it rather than just giving it at specific times. Transition worker

School for Social Care Research Importance of Support  Social workers  Voluntary organisations (including direct payment support services)  Peers (other young adults, or others with same condition)  Families (practical and emotional support) 8 I think if people know that there's that support around, they go for it... but I don't think everybody knows that support's there. Support planning manager

School for Social Care Research Negotiating Parents’ Involvement  Practitioners thought it may be hard for parents to ‘let go’  But recognised that parents are:  Knowledgeable about the young adult and their needs  Experienced in supporting their son or daughter  An important part of a young person’s support network 9

School for Social Care Research Facilitating Changes in Family Relationships 10 Some things that were considered acceptable when they were younger, such as parents being involved in personal care, parents facilitating social contact, may become less acceptable as a person gets older, and quite correctly… I’ve always been of the view that we need to explore with young people and their parents what it does mean, about the fact they’re getting older. Lead Specialist Practitioner for Personalisation

School for Social Care Research EXPERIENCES OF PARENTS 11

School for Social Care Research Parents’ Experiences  Gradual changes in role over time  Most happy for young adult to take more responsibility  BUT support must be right 12 You want to ensure that you're putting things in place that will work for the future, to allow you to let go as parents, and to allow the young person to go confidently.

School for Social Care Research Parents’ Role in the Future  Most anticipate playing some role in the future  Help with PA recruitment  Providing a ‘listening ear’  Emergency care, especially PA/carer cover 13 I'd like to think I'd just be involved as a parent.

School for Social Care Research EXPERIENCES OF YOUNG ADULTS 14

School for Social Care Research ‘Taking Control’ Experiences  Welcomed independence and control gained from taking on more responsibility  Routes used to gain increased control:  Staged approach – local authorities managing at first  Using DPs from start – using DPs for some support 15

School for Social Care Research Young Adults Concerns  Anxiety around assuming responsibility, especially becoming ‘an employer’  Young adults felt they lacked necessary life experience 16

School for Social Care Research Sources of Support  Support and advice from:  Parents – practical, administrative, information and emotional support valued  Other DP users, especially, peers and those with similar conditions – situation specific advice valued 17

School for Social Care Research Transition Planning and Preparation  Mixed experiences:  Some found children’s services staff lacked knowledge of personalisation and adult social care practices  Others valued ‘helpful’ social workers – those knowledgeable, having a ‘can do’ approach 18

School for Social Care Research Young Adults and Personal Assistants/Carers  Young adults wanted:  PAs recognising and respecting their interests, preferences and priorities  PA characteristics:  Similar age - helped make carer/cared for relationships less obvious in public, more likely to share interests  Young females preferred female PAs, especially for personal support 19

School for Social Care Research Challenges: Managing People  Managing people reported as most difficult part of taking on more control, especially:  Managing poor PA performance  Establishing relationship boundaries  Lack of confidence and life experience made it difficult 20

School for Social Care Research Challenges: Finding Appropriate Information  Information received often viewed as not suitable or relevant to them, as physically disabled young adults:  Tailored to other service user groups 21

School for Social Care Research Practice Implications (1)  Physically disabled young adults minority group within adult social care, have specific support needs due to:  Relative immaturity, life-stage, patterns of parental involvement  Practice can take account of this offering more:  ‘Staged approaches’ to take on more control  Low risk opportunities within transition planning and preparation 22

School for Social Care Research Practice Implications (2)  People management training and support  Recognition of each young adult’s family support patterns and preferences  Opportunities to access peer support, especially via social media  Relevant information  Further training for practitioners about young adulthood and young adults with physical disabilities may help 23

School for Social Care Research Further Information SPRU website: bit.ly/sptotobit.ly/sptoto This presentation presents independent research commissioned by the NIHR SSCR. The views expressed are those of the authors and not necessarily those of the NIHR SSCR or the DH, NIHR or NHS. 24