Transcript Presentation of DI experience in Norway Background

DISABILITY SERVICES:
THE SHIFT TO COMMUNITY LIVING IN
SCANDINAVIAN COUNTRIES
Jan Tøssebro
NTNU Social Research/Norwegian University of
Science and Technology
Paris 15. December 2016
Background
• A pervasive trend in welfare services:
• Child protection (1953)
• Special education (beginning in 1959)
• Care for elderly people (1980s)
• Mental health services (beginning about 1970)
• Services for disabled people
• This talk:
• Deinstitutionalisation for intellectually disabled people
• Starting in the 1960s, full transition in 1990s (Norway and Sweden)
• Concurrent trend – decentralisation
• From state (state-private mix) to counties to local government
• Local government fully responsible from mid-1990s
Images of community care
• 1950s (and 60s)
• A minor supplement to institutions
• Ideology played no role
• 1970s and 80s
• Community care the preferred alternative
• Institutions unwanted but necessary: the only realistic option
for people with extensive service needs
• Children should grow up at home
• 1990 and beyond
• Institutions are unwanted and unnecessary
• Community care the only option, level of services can be
adapted to all levels of needs
The birth and development of the idea
• Professionals (inspiration developmental/child psych)
• New optimism – new purpose, labelling theory
• Normal stimuli is the better environment for development
• Institutions are intellectually disabling
• Parents and the public (inspiration welfare policies)
• Unacceptable living conditions
• The myth of the welfare state – groups left behind
• Segregation means stigmatisation
• Politicians (inspiration “number of beds”)
• Changing typical services in order to serve a more diversified group
of people – e.g. schools
Two waves of deinstitutionalisation
• 1960s and 70s:
• The ideology of normalisation
• Children
• Improved living conditions in institutions
• Early deinstitutionalisation for adults in Sweden
• 1990s:
• Full deinstitutionalisation
• Transfer of responsibility from regional health authorities to local
government (social services)
Replacing institutions
People per 1000 inhabitants, Source: Tøssebro et al. 2012
2.5
2
Sweden inst
1.5
Finland inst
Norway inst
Sweden cc
1
Finland cc
Norway cc
0.5
0
1960
1965
1970
1975
1980
1985
1990
1995
2000
2005
Resistance/ opposition
• A top-down process – partliamentary decisions
• Made things happen
• Met opposition:
• Parents
• The activist vs common parents divide
• Changed into general support
• Professionals and staff
• Worry: deprofessionalization and learning
• Changed into «watchdogs» and normalisation as the new ideology
• Media
• Initially publishing scandals
• Giving voice to opposition
• Changed into silence
Outcomes
• More people have services
• Family: from opposition to support
• Much improved housing conditions
• More self-determination/ choice in everyday matters
• Community presence and neighbourhood reactions
• The revolution that disappeared (occupation, social
networks, leisure …)
• The loneliness issue
• The presence issue
• Few failures
Family attitudes
Source. Lundeby and Tøssebro 2006
60
54
50
50
40
Percent
40
pre reform
30
post reform
26
23 22
ten years after
20
17
13
10
14
12
11
7
4
4
3
0
yes,much
better
yes, somewhat
better
no significant
change
Family attitude
no, institutions no, this went all
were better
wrong
Housing conditions: Norway 1994
• 82% moves into a full apartment
• 6% lives semi-independent, others in group homes
• Group size (number in the house) of 3-4 (mean 3,7)
• Mean private space: 48 square meters
• 18% without full flat
• Housing is not just standard:
• Family: «feels more like a visit to my son or daughter»
• Staff: conflicts and negative relations among residents reduced
Longer terms outcomes –
diverging trends
• Housing
• Full apartment for all; more people have services
• Larger group homes; more mixed groups
• Employment
• Examples of innovations
• Moving away from the normalisation ideals
• Integration
• Acceptance, not integration
• Few changes in social networks
• Community presence taken for granted
• Family attitudes:
• Going back to institutions no issue
Lessons
• Little to be afraid of (if adequately planned and
implemented)
• Scepticism turned into support
• Safeguarding future development
• Norway left too much to local government without regulations
(only soft guidelines) and national monitoring/incentives
• The anchoring at local political level was insufficient
• Rules and regulations of community care is needed for
groups with a weak voice
• Documentation important
• Need to rekindle the ideological drive?