1. ENIL’s Research on Article 19 of the CRPD
Lilia Angelova-Mladenova
European Network on Independent Living (ENIL)

2. EUROPEAN NETWORK ON INDEPENDENT LIVING
Article 19
Choice
Support services
Mainstream services

3. The research Motivation Methodology ENIL priorities
General Comment on Article 19
Methodology
Literature review
Interviews, focus groups, side event
All continents and impairment groups

4. The research: main areas
Understanding of independent living and community living
Challenges to the realisation of Article 19
Future directions

5. Myth about independent living
Challenges
Myth about independent living
The meaning of independent living
Disabled people will be isolated and lonely if they live independently. Independent living means you have to move away from your family and live on your own.

6. Challenges
The meaning of independent living = living outside the family
‘Family is an important issue to us. So, to get to live independently in adulthood is not an important issue as it might be in North America or maybe in Europe or in other parts of the world’.
‘… the child need to be able to live independently, go to school, to the playground, to be able to be included in the community since the friends are also important, not the family’
(participant from Latin America)

7. Challenges The meaning of independent living
‘Independent living does not mean living alone.’
‘…There will never come time when every person living in a slum will have a personal assistant. It's not going to happen. And I wonder if this should happen because if I had all the services provided to me by the state, supposed I have all kinds of services provided by the state and I am living alone in my house and I have this assistance with everything, will it make my family redundant. Is it just me and all my services’
(Participant from Asia)

8. Challenges Community attitudes and beliefs related to disability
witchcraft, contagious, punishment from God
unfortunate event
scroungers
Community practices
- violence, isolation, avoidance, protests

9. Challenges Institutionalisation Wide spread practice
Legislation and policies supporting institutionalisation
Culture supporting institutionalisation and isolation

10. Challenges Support services
There are people who are creating group homes but in the group home nobody can step out, nobody can go out in the neighbouring communities, get employment, have a partner…’
(participant from Asia)
Support services
lacking or insufficient – poverty and isolation
hijacking terminology (institution=community-based service)
small group homes – institutional culture; medical model
traditional way of provision
cuts

11. Challenges Inaccessible mainstream services
Legislation and policies – absent or not implemented
No vision and understanding
Community attitudes

12. Challenges Development cooperation programmes support the status quo
No paradigm shift; medical model is still dominant

13. Recommendations
Define key terms, such as ‘independent living’, ‘community living’, ‘choice’
Relationships with the family and community
Institutions
Clarify what is an institution
State that institutions should not be supported
State that institutions should be replaced with accessible mainstream services and community-based support
Support services
Based on the principles of choice and control
Disabled people are involved in the design and evaluation

14. Recommendations Stress on the importance of taking actions related to:
awareness raising (Article 8)
accessibility (Article 9)
legal capacity (Article 12)
education (Article 24)
employment (Article 27)
social protection (Article 28)
disability-inclusive international cooperation (article 32)

15. Recommendations Stress on human rights and equality for all
‘If you live in a global community, which has a culture of inclusion… for everyone, not only disabled people, then disabled people have a right to realise the right to independent living and living in the community.’ (Europe)

16. Thank you for your attention. Lilia Angelova-Mladenova lilia
Thank you for your attention! Lilia Angelova-Mladenova