Ethnicity and Disability: Minority families with disabled children

1
Ethnicity and Disability Minority families with
disabled children

• Associate Professor Berit Berg
• Department of Social Work and Health Science,
• NTNU, Norway
• berit.berg_at_svt.ntnu.no

2
My background

• Social worker and sociologist
• Research on immigrants and refugees last 25 years
• Head of Research on Diversity and Inclusion, NTNU
• Sister an step son with disabilities
• Board of National Society of Autism
• Research project on Minority families with
  disabled children

3
Motivation

• Research shows that families with disabled
  children have a problematic and frustrating
  relationship with the service system
• Non-western migrant families are underrepresented
  in most of this research
• Reports from service agencies indicate a higher
  prevalence of disabled children among these
  families
• Both immigrants and professionals suggest severe
  interaction difficulties
• How do we understand end interpret the situation?
  
• To which extent is the situation different from
  other families with disabled children?

4
Need for more knowledge on

• Prevalence
• Explanations
• Strategies for better collaboration
• Good practice
• But also
• Awareness of the heterogeneity of the immigrant
  population
• Awareness of the heterogeneity of the majority
  population

5
Migrants in Norway a heterogeneous group

• The migrant population 500.000 (10 of total)
• Five doubling in one generation
• About 50/50 men and women
• 217 different nations are represented
• 2/3 with non-western background
• About 125.000 are less than 20 years
• About 100.000 are descendants
• About 125.000 are refugees

6
Refugee background

• Diseases caused by poverty and war
• Post Traumatic Stress Disorder (PTSD)
• Neglect
• Refugee background strengthen the problems. To
  some extent they may also cause some of the
  problems. Lots of unanswered questions.

7
The exile situation

• Stress factors
• Extreme experiences
• Loss
• Betrayal
• Uncertainty
• Situation in homeland
• Refugee status
• Exile situation
• Potential
• Individual resources
• Network
• Service system

• VULNERABILITY
• RISK FACTORS
• FACTORS OF PROTECTION

8
Research project

• Funded by Health and Rehabilitation (2008-2010)
• Objectives
• Cultural awareness
• Knowledge about diversity
• Non discriminatory practice
• Data collection in three regions
• Oslo
• Trondheim
• Kristiansand

9
Aims of the project

• More knowledge about challenges for migrant
  families with disabled children
• Development of strategies for better
  collaboration between the service system and the
  families

10
Main topics

• Understanding of disease or disability
• Treatment experiences
• Potential for learning
• Expectations towards the service system
• Experiences with the service system
• The transitional stage between kindergarten and
  school
• Network and family support

11
The families

• Children between 2 and 12 years of age
• Wide range of disabilities most of the children
  have multi diagnoses
• Different ethnic and religious backgrounds
• 17 different languages
• Different migrant history
• Refugees
• Labour migrants
• Family reunification

12
Design

• Collaboration with service providers and users
  organisations
• Qualitative study based on in-depth interviews
• with parents and professionals
• Group interviews with parents and professionals
• Observation of children in kindergarten and
  school
• Participating in meetings with professionals
• All information is translated into the
  participants mother tongue
• Use of professional interpreters when needed

13
Experiences I

• Parents report extensive challenges
• to accept their situation
• to tell about their disabled child to family and
  friends
• to understand the service system
• to get enough and adequate help
• to collaborate with the service system

14
Experiences II

• Language problems constitute serious obstacles to
  all collaboration
• Refugee background is a risk factors and
  increases the total level of stress in the
  families
• Many first generation immigrants know little
  about the welfare system and the role of
  different professionals and agencies
• Professionals need more information on specific
  challenges for families with an ethnic minority
  background.

15
What about culture and religion?

• Cultural background and religion seem to be less
  important than professionals assumed
• Language and communication is often understood as
  culture and religion
• International studies show that poverty and
  discrimination represent huge challenges to
  minority families with disabled children
• Our study support these findings
• Very few examples of traditional thinking
  (disability explained by black cats, wrong
  moon positions, evil spirits, black magic
  etc)
• Everyday life of minority families with disabled
  children is not at all wrapped in mystery

16
Hard work and hope

• Parents talk about strenuous days and struggle
  for treatment and special education. At the same
  time most of the parents express hope, optimism
  and gratitude towards the service providers. As
  time pass, some of the optimism seem to be
  replaces by more resignation. You realise that
  treatment and special education will never cure
  your child, and differences between your child
  and other children is increasing. These are
  experiences most parents with disabled children
  have in common regardless of ethnic background.

17
Language and communication

• Language problems strengthen the challenges for
  many ethnic minority parents, and language
  problems also influence the ability to receive
  and understand information about both the
  disability and the welfare system. Service
  providers seldom use professional interpreters
  even if the language problems are obvious. This
  might cause
• misunderstanding
• suspiciousness
• lack of confidence
• collaboration problems and in the end
• inadequate and insufficient help.

18
Differences and similarities

• Most challenges are the same, but strengthened by
  the minority background
• Lack of information
• Long way from concern to confirmation of needs
• A fragmented service system
• Transition problems
• Some specific challenges
• Language problems
• Culture differences
• Lack of network and role models
• Less knowledge about our welfare system
• Refugee background
• Discrimination and prejudice