Deinstitutionalisation

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Deinstitutionalisation Supported Accommodation
in the UK

• Eric Emerson
• Institute for Health Research
• Lancaster University, UK

eric.emerson_at_lancaster.ac.uk www.lancs.ac.uk/depts
/ihr/publications
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Three Issues .

• Scale and nature of institutional closures
• What we have learned
• Future challenges

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Supported Accommodation in England 1976 - 2001
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Changes in Policy Practice

• Move of children more able people (1960-1980)
• Development of purpose built provision for people
  with severe disabilities, including a small
  number of cluster developments (1970s gt )
• Use of domestic housing (1980s gt)
• Final closure of long-stay hospital beds (April
  2004)
• Undoing early mistakes
• Reproviding first generation services and Local
  Authority accommodation (1990s gt)
• Review of larger cluster developments through
  Person Centred Planning

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What Have We Learned

• about the success of institutional closure?
• about what works best?

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Outcomes For People

• Smaller community-based housing and support
  services provide higher quality support and
  better outcomes for people than larger more
  institutional forms of provision (ODPM DH,
  2003)

http//www.doh.gov.uk/learningdisabilities/housing
support.pdf
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Benefits

• Systematic review of UK literature 1980-1995
• 118 publications
• 70 separate studies
• 5,800 people with intellectual disabilities

• Definite benefits in many areas (community
  presence, engagement, support, satisfaction)
• Probable benefits in other areas (friendships,
  choice)
• No benefit in one area (challenging behaviour)
• No systematic disadvantages

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What Works Best?

• Small community-based supports offer better
  outcomes than
• State operated institutions
• Cluster campus style developments
• Larger community-based supports

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Clusters Campuses An Acceptable Option?

• Developed as part of institutional reprovision
  programme
• New build
• Primarily state operated

• Few advantages
• staff qualifications, procedures for assessment
  teaching, access to health checks, perceived risk
  of exploitation in local community
• Many disadvantages
• less homely more institutional, lower staffing
  ratios, less access to advocacy, poorer internal
  planning procedures, more likely to receive
  anti-psychotic medication, less choice, smaller
  social networks, less access to day services,
  less and less varied community presence
• Marginal cost savings (11-13)

• PCP review
• Reprovision plans

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Intentional Communities

• Strong ideological or religious identity
• Developed independent of institutional
  reprovision programme
• Primarily operated by independent sector

• Advantages
• internal planning procedures, access to health
  checks, access to structured day activity,
  safety and security
• Disadvantages
• less homely more institutional, lower ratios,
  fewer qualified senior staff, less access to
  independent advocacy, social exclusion (presence
  relationships)
• Very marginal cost savings?

• Support choice at individual level, but no plans
  for increasing provision

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What Makes A Difference?

• There are few robust relationships between
  measures of resource input and either the quality
  of support or outcomes. Quality is determined by
  how resources are used (ODPM DH, 2003)

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Accounting for Variation in Quality

• Moderate to strong association between outcomes
  and
• participant ability
• staff support (Active Support)
• Weak associations between
• outcomes and resource inputs (costs, staffing
  ratios, staff skills) or structural
  characteristics (size, location)
• participant ability and resource inputs

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An Acceptable Quality of Life?

• The quality of support and outcomes provided by
  community-based housing and support services is
  often unacceptable when judged against the
  aspirations of Valuing People (ODPM DH, 2003)

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Importance of Normative Comparisons
Rights-Based Approaches

• Social exclusion
• Disempower-ment
• Poor health
• Exercise
• Obesity
• Drug use

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Being Socially Excluded/Lonely
I like quiet, but its a bit too quiet
here..its quite lonely, no one comes up here.

• Many people have nobody among their friends who
  does not have an intellectual disability (apart
  from staff or family)
• 50 of people in supported living and small group
  homes
• 75 of people in typical community-based
  accommodation
• 90 of people in village communities or cluster
  housing

I get bored staying indoors all the time.
Some friends have died, some have moved away.
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Having Little Choice
This is where I was put. This is the place they
said stay where youre at.

• Who you live with
• 25 of people in supported living
• 5 of people in small community-based
  accommodation and village communities
• 0 of of people in cluster housing

• Who supports you
• 5 of people in supported living or small
  community-based accommodation
• 0 of of people in village communities or cluster
  housing

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Leading Unhealthy Lives

• Women (and in particular younger women) with
  intellectual disabilities are much more likely to
  be obese

• Most women and men with intellectual disabilities
  have little or no physical exercise

• Far too many men and women with intellectual
• disabilities take anti-psychotic medication

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Exercise Among Women Strenuous
Housework/Gardening
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Exercise Among Men Regular Sport/Vigorous
Exercise
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Regular Use of Anti-Psychotic Medication
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Current Challenges

• Addressing unmet need, growing demand
  inequalities
• Creating the conditions for making
  self-determination work
• Managing organisations against what they actually
  achieve
• Challenge ourselves Keep learning listening

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THE END
eric.emerson_at_lancaster.ac.uk www.lancs.ac.uk/depts
/ihr