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 Councillors and Trustees Seminar St John’s Hotel, Solihull, Birmingham 6 February 2009

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

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  : 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

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

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’

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

Services Where Choices were Particularly Important All AreasImportant HealthCare Equipment Education/training Social Care Housingadaptations Transport Leisure Employment Working Age Adults Older People Young People Parents TOTAL

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

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)

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

 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

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

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

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

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

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

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

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

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

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

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)