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

 

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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)