Inside the Belly of the Beast: the social model of disability and government policy

1. Inside the Belly of the Beast: the social model of disability and government policy Jenny Morris

2. “….. being inside a whale is a very comfortable, cosy, homelike thought. ….The whale's belly is simply a womb big enough for an adult. There you are, in the dark, cushioned space that exactly fits you, with yards of blubber between yourself and reality, able to keep up an attitude of the completest indifference, no matter what happens”. George Orwell: Inside the Whale.

3. “Life Chances” signalled the adoption of the social model of disability Disability is defined as • disadvantage experienced by an individual resulting from • Barriers to independent living, education, employment and other opportunities • That impact on people with impairments or ill health.

4. …and the adoption of disabled people’s definition of independent living “All disabled people having the same choice, control and freedom as any other citizen – at home, at work, and as members of the community. This does not necessarily mean disabled people ‘doing everything for themselves’, but it does mean that any practical assistance people need should be based on their own choices and aspirations.”

5. Key influences • A body of research and evaluations, informed by the social model of disability, which put forward a definition of independent living and made the case for policies that would deliver this aim • Increasing practical experience of the benefits of giving individuals choice and control over how their support needs were met, primarily through direct payments (cash payments in lieu of community care services), pioneered and campaigned for by disabled people and their organisations • Piloting of self-directed support, using individual budgets, for people with learning disabilities.

6. “Life Chances” proposed a new system of support Key characteristics of new system: • Simplified resource allocation system • Bringing together of different funding streams • ‘One stop’ assessment and information • Self assessment • Individuals have control over budget • Advocacy or other support if required • User-led organisations, modelled on Centres for Independent Living.

7. Subsequent developments • Piloting of individual budgets • ‘Putting People First’ concordat • Independent Living Strategy • Welfare reform green paper: the ‘right to control’

8. Underpinning principles • Social model of disability: tackling disabling barriers • Independent living: choice and control over assistance/equipment required • Human and civil rights: removing disabling barriers and delivering choice and control > enable self-determination > and therefore participation and contribution.

9. Co-production of the ILS • an Expert Panel, of disabled people, family carers, and representatives of those responsible for delivering and inspecting services • workshops to address some specific issues identified as important by disabled people: transition to adulthood for young disabled people; older disabled people; advocacy • meetings with people representing particular groups, such as people with autistic spectrum disorder, people with mental health support needs, disabled parents, people with learning disabilities • regional public meetings with disabled people to discuss emerging policy proposals • case studies based on real life situations.

10. Independent Living Strategy, 2008 Overall aim is that, by 2013: • Disabled people (including older disabled people), who need support to go about their daily lives will have greater choice and control over how support is provided • Disabled people (including older disabled people) will have greater access to housing, transport, health, employment, and leisure opportunities and to participation in family and community life. www.officefordisability.gov.uk

11. A cross government approach IL Strategy incorporates: • Lifetime Homes Lifetime Neighbourhoods: accessible housing; housing advice and information; rapid repairs service. • Putting People First: personal budgets; universal advice, information and advocacy; user-led organisations. • Aiming High: person-centred planning and advocacy for 14-19 year olds – and planned extension to 19-25 year olds.

12. A detailed and comprehensive approach to independent living For example: • Commitment to enable choice and control over continuing healthcare • National strategy on enabling people to remain in employment when they acquire an impairment/long-term health condition or an existing impairment/condition worsens • Cross government toolkit on independent living and older disabled people • Communication strategy aimed at creating cultural shift amongst health and social care practitioners • Enhancing personal mobility options for people for whom public transport is not an option.

13. Shared Vision & Outcomes Framework Vision: All disabled people will have the same choice, control and freedom as every other citizen and any support is based on individuals’ own choices and aspirations Greater Choice and Control Access to housing, education, employment & transport opportunities Participation in family & community life Measured through : Public Service Agreements, National/Local Indicators, Local Area Agreements, Comprehensive Area Agreements

14. Monitoring progress • Annually • In partnership with disabled people • Against a detailed set of outcomes • Consider what more needs to be done in time for next spending review • Review the need for legislation.

15. Limits to progress • Disabled people are more likely to be unemployed, living in poverty, living in poor or unsuitable housing conditions, experience unfair treatment at work, have fewer qualifications, etc. • Older disabled people are more likely than either younger disabled people or non-disabled people to be on low incomes, socially excluded or isolated, in poor health, and live in substandard housing or in institutional care.

16. Challenges • Grass roots ideas lose touch with original intentions when adopted by government • ‘Marketisation’ of social care services has disadvantaged disabled people’s organisations • No progress on ‘portability’ • Social attitudes towards older disabled people.