Post on 17-Jan-2016
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.uk
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 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
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 A
reas Imp
ortan
t
Health
Care
Eq
uip
men
t
Ed
ucatio
n/
trainin
g
So
cial Care
Ho
usin
g
adap
tation
s
Tran
spo
rt
Leisu
re
Em
plo
ymen
t
Working Age Adults
22 18 8 4 3 3 3 3 7
Older People
4 15 8 0 4 6 7 3 0
YoungPeople
4 3 0 1 2 1 0 1 1
Parents 29 3 1 11 3 1 1 2 0
TOTAL 59 39 17 16 11 11 11 9 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
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)