1. CEE/CIS – Children with Disabilities abandoned into institutions How to fix them - that

2. ‘ You can make a connection when you laugh ’ http://www.nytimes.com/2012/07/08/business/media/ads-for-mcdonalds-and-las-vegas-aimed-at- harried-workers.html?_r=1

3. Some figures About one third of children in residential care are classified as having a disability In some countries up to 60% of institutionalised children Proportion varies, depending on other factors

4. Consequences of institutional care separation from parents, and especially being placed in residential care, as a young child and/or on a long-term basis, can have detrimental impacts on all children: – Children are not able to form deep attachments with staff who work shifts – impaired growth, social and emotional development, and delayed cognitive and motor development. – Many children growing up in this environment may suffer long-lasting damage.

5. Disability and Children’s Rights CRC – Right to grow up in a family environment Alternative Care Guidelines CRPD – ‘Children with disabilities shall have equal rights, shall not be separated from their parents against their will, except when the authorities determine that this is in the child’s best interests, and in no case shall be separated from their parents on the basis of a disability of either the child or the parents’

7. Disability and Social Position Disability and language – ‘disability’ is opposite to ‘ability’ – ‘invalid’ = a person who is not ‘valid’ (not human?) – ‘defectologists’ in Eastern Europe Powerlessness – Experts make the decision on whether someone has a disability or not – where is the right to participation of parents or children

8. Disability and Labels

10. Fears about Disability Social sanctions – Stigma – Exclusion – ‘Difference-phobia’ – Fear of loss of social status How do I deal with my child with disabilities? – The experts know best (factual belief) – Other people’s fears How can I cope with the child dying?

12. Normative and Empirical Beliefs Persons with disabilities should not be in public life (normative belief) I should follow the advice of the experts (normative belief) I am not capable to take care of this child (personal belief) I don’t see many people with disabilities in public life (vicious circle leading to empirical belief)

13. How does this compare to the other case studies Vastly complex topic (social construction, power, variety of disabilities) Disability does not affect everyone directly, unlike OD or footbinding or FGM/C In Eastern Europe community meetings are more formal Using ‘disgust’ as a tool is not possible – people need to overcome their disgust Public declaration – maybe – but different

14. Desired outcomes Children with disabilities should enjoy the same rights as all other children, ie – Education (pre-school and school) – Access to health services – Access to, and participation in, general public life

15. Work done so far Lots and lots and lots of studies – Children with disabilities In institutions Suffering violence Often by country – It’s About Ability But did they get the right Audience?

16. What to do? Start with one municipality Research Action and implementation Measurement of success

17. Research The social norms questionnaire, including different scenarios and asking individuals ‘what would you do if you were in this situation’ Focus groups Discourse analysis Individual interviews with parents with children with disabilities, comparing those who have abandoned and those who have not

18. Action!

19. Measurement of success Important to measure OUTCOMES FOR CHILDREN! – Number of CWD placed in institutions – Number of CWD in inclusive services – Number of CWD using services in communities Can also measure social norms change (surveys, discourse analysis) but RESULTS FOR CHILDREN are more important

20. Social Norms are only Part of the Scheme Social Norms Policies Systems