Support and Diversity

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Support and Diversity

• Debbie Jolly and Mark Priestley
• Centre of Disability Studies
• University of Leeds

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ESRC Research Project

• Relationship to the DP Survey Group
• UK-wide comparative approach
• Policy and statistical review
• 21 key informant interviews
• 102 telephone interviews with lead officers
• 8 multi-stakeholder case studies

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Key Themes

• ? Explaining variation in take-up
• ? Infrastructure and enablers
• ? Disability activism and support organisations
• ? Independent living vs direct payments?
• ? Current trends and issues

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Early Signs

• Campaigns by disabled people and their allies for
  payments in lieu of services
• Key areas South, South East and Midlands of
  England (indirect payments from the early 1980s -
  1990s)
• Different levels of activism and demand for
  direct payments in different parts of the UK
• Reflected in early growth of schemes

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• I think that if it hadnt have been for disabled
  peoples organisations throughout the country,
  the whole idea wouldnt have got where it isits
  the disabled peoples movement thats made it
  what it is
• There just wouldnt have been direct payments if
  there hadnt have been that movement the
  independent living movement has been crucial.
• (key informant interviews)

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Activism and Partnership

• Activism alone is not a sufficient condition
• Importance of partnerships with LAs and local
  champions e.g. Hampshire, Derbyshire, Essex,
  Edinburgh
• Areas of limited activism low take-up
• Northern Ireland lack of ownership of policy
• Wales Only one LA reported working in
  partnership with a group of disabled people

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The first five years2002

• support services really made a difference
• all the authorities with above average numbers of
  direct payments users already had local support
  services in place
• the quickest growing direct payments schemes had
  support services led by disabled people
  themselves
• NCIL was important in sharing knowledge and advice

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Importance of Early Support Organisations

• areas without support organisations were more
  likely to have no or few direct payment users.
• In-house (council-run) support organisations had
  fewer users than other types.
• Seven of the top ten authorities across the UK
  had user-led support organisations.
• CILs and user-led organisations appeared to
  substantially increase the number of direct
  payment users in an area.
• emphasised in policy documents, e.g. Improving
  the Life Chances of Disabled People

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• Take-up of direct payments has been better in
  areas with support schemes and strong
  organisations of disabled people
• If you dont have people like us around to
  support you through the whole process you
  actually have no idea what is around
• (key informant interviews)

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Support for direct payments

• Good support organisations are crucial
• Publicity, training and advocacy
• Support for assessment (self assessment)
• Facilitating user-authority contacts
• Aiding recruitment processes
• Communication with care managers
• Helping with back-up and admin
• Support for indirect payment options

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Organisational change

• Some old organisations are providing support
  for direct payments, but adopted this function
  more recently
• Some organisations have both history and
  experience, but
• marketisation of support functions is beginning
  to favour new organisations (especially in
  England)
• Potential for mission distortion

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Additional Functions

• Most support organisations offer other functions
  (across regions and types)
• Advocacy and campaigning remain important
  functions for many but these may be challenged in
  contracting for support services

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Additional functions

• Support for people receiving ILF - 30
• Benefits advice - 13
• Domiciliary services - 13
• Information and advice services - 13
• Resource centre - 9
• Volunteer groups - 6
• Disability access resource - 5
• Payroll support - 5
• Disability information services - 5
• Campaigning - 5

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• Conflict between operating as a support to
  people and advising them support conflicting
  with the advocacy role for disability rights and
  independence
• We are concerned that we want to get direct
  payments broken away from the disability
  agendaso we havent in our tendering process
  placed any emphasis on the disability agenda
• (Local Authority interview)

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Local regional - national

• Three quarters of Scottish organisations were
  local groups (compared to 58 in Wales and 41 in
  England)
• Larger and national organisations are
  increasingly taking on support contracts in
  England but varies greatly by region
• In-house support was more prevalent in Northern
  English regions

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Local regional - national
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Local regional - national
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Support for Diversity

• sensory impairment 90
• learning difficulties and physical impairment
  86
• mental health 85
• children 80
• carers 75

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Support for Diversity
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Possible connections

• Positive association between number of years
  organisations have been offering support and the
  number of users (these are mostly user-led)
• Overall negative association between number of
  users and proportion of in-house support schemes
  (e.g. absence of local user groups?)
• Positive association between support
  organisations identified as purely local and
  the number of direct payments users

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Possible responses

• Dedicated staffing and local investments
• Involvement of direct payments users in promotion
  and training
• Investments in user-led support services
• Embedding direct payments support within the
  wider independent living context
• A strong national lead on independent living