1. 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

2. Background A pervasive trend in welfare services: This talk:
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

3. 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

4. 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

5. 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)

6. Replacing institutions People per 1000 inhabitants, Source: Tøssebro et al. 2012

7. 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

8. 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

9. Family attitudes Source. Lundeby and Tøssebro 2006

10. 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

11. 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

12. 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?