1. What Choices are Important to Younger and Older Disabled People, in What Circumstances and Why? Parvaneh Rabiee, Caroline Glendinning, Kate Baxter, Hilary Arksey, Janet Heaton, Wendy Mitchell, Tricia Sloper Email: pr15@york.ac.ukpr15@york.ac.uk Councillors and Trustees Seminar St John’s Hotel, Solihull, Birmingham 6 February 2009

2. Structure of Presentation  Policy context and the rationale for the project  Aims and methods  The key findings  Conclusion

3. Policy Context and the Rationale for the Project  Government agenda: extending choice and control:  1997: Direct payments – initiated by the Disability Movement  2000: In-Control scheme  2006-2008: Individual Budget pilots  Why choice matters?  Central to achieving independence, social inclusion and principles of citizenship and human rights  Redresses power inequalities between helper/helped BUT  Would everybody want to exercise choice?  Does it work the same way for everybody?  Need to know the challenges for different groups of people

4. Aims of Study  To look at realities of exercising choice in changing circumstances  To examine conditions under which disabled and older people make choices  To examine consequences of choices  To explore impact of choice on perceived independence

5. Design and Methods  Longitudinal study design: three in-depth interviews over three years  Three groups of participants:  Young people, degenerative conditions (N=34, age 13-21) and their parents  Adults/older people, fluctuating conditions (N=30, age 18+)  Adults/older people, sudden onset of disability (N=22, age 18+)  Recruited from:  Voluntary organisations/support groups  Social Services  Hospitals  Independent recruitment agency  Children’s hospices  The Family Fund Trust  ‘Snowballing’

6. Focus of this Presentation  Draws on first round of interviews  Report what choices are important for which groups of people and in what areas of life

7. Services Where Choices were Particularly Important All AreasImportant HealthCare Equipment Education/training Social Care Housingadaptations Transport Leisure Employment Working Age Adults 22188433337 Older People 4158046730 Young People 430121011 Parents29311131120 TOTAL5939171611 98

8. Healthcare - Important Choices  Where to have treatments  Quality of care more important than location  Near home when:  It benefits others  Standard of care is the same everywhere  Not involving major treatments  At home:  To have family around  Language/cultural barriers  Fear of infections in hospital wards  Where shorter waiting list  Where all care can be delivered in one place

9. Healthcare - Cont….  What treatments to have – whose choices?  ‘Expert patients’ who use previous experiences to make choices:  Those with long standing conditions better able to make choices than those with recent/one-off health problems  Choice not important, just want ‘the best’ professional help:  About issues they do not know well  When not well enough to make decisions  Would like more of a say in their healthcare when older (young people)

10. Equipment - Important Choices  Choice important if helps to retain sense of independence:  What equipment to use  When to use it  When to have equipment  Choices limited by the rules about eligibility criteria  Choices important in retaining identity and self-esteem:  Appearance important  Lack of choice often made people purchase equipment privately

11.  Choices important in maintaining independence:  Physical access  Access to social life  Being near family for support  Choice of planning ahead for future housing needs  Choices in relation to a chosen lifestyle:  Not to turn the kitchen into a ‘disability kitchen’ Housing and Adaptations – Important Choices

12. Education/Training - Important Choices  Choices that support training opportunities/career progress:  Access to courses  Access to support networks  Access to more than one realistic option  Choice of ‘right’ school, best suited for the child in the long-term:  Concerns for child’s safety, inclusion in school activities, healthcare support, staff attitude  Limited choices make families accept what they get or pay for an alternative

13. Social Care - Important Choices  Choices important over:  Who carers are  What carers do  Time allocated  Choice over continuity of care:  Giving people time to adjust to new situations  Lack of choice makes people…  Give up home care services  Buy services privately (if can afford it)  Turn to partners for support – concerns about…  Impacts on partner’s life  Relationships with partners  Losing choices

14. Employment - Important Choices  Choice over flexible/supportive employment:  Flexible working hours  Chance to take time-off  Changing responsibilities at work  Supportive environment

15. Leisure and Transport - Important Choices  Choice over leisure facilities that are:  Accessible  Physical access  Access to transport - not wanting to be a burden on family  Desirable  Affordable

16. Common Themes within Age Groups  Adults:  Health, equipment and employment choices  Family responsibilities  Choices to support financial security  Older people:  Health, equipment, transport and housing  Choice of good local services  Access to door-to-door transport  Young people and parents:  Health, education and social care  Choice of having all the care in one place for multiple service users  Choice of a good school

17. Conclusion  Why choices are important?  Improve quality of life  Support social inclusion and respect human rights  Retain a sense of independence  Retain identity as non–disabled person and self- esteem  Maintain interdependent relationships  Choices only realistic if they give people what they want  Choices are conditional and circumstance specific – a choice in one situation may not be a choice in another situation

18. Conclusion - Cont….  Important choices vary according to age, nature and severity of condition, previous experiences of services and family circumstances  Patients have the right to choose hospital, but the choice of hospital not necessarily the most desired area of health related choices:  Older people prioritise home treatment  Some people preferred complementary care to medication  Parents of children with long-term conditions more interested in the management of their child’s care

19. Conclusion - Cont….  Choices people want to exercise are not just about their health and social care:  Choices over planning future housing needs  Choices over flexible employment  Choices over suitable school  Choices often made within the context of family relationships where outcomes for more than one person are considered

20. Implications for Policy and Practice  User consultation and involvement  Whole family approach to providing support  More options available  More flexible eligibility criteria  Service flexibility  More appropriate transport

21. Questions for discussion  How useful/relevant is this research to your service?  How will you make use of our research findings to improve or consolidate your service?  At what level? (individual, team, departmental, inter-agency)