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

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

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

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

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.

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)

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)

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

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

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

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

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

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

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)

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)

Thank you for your attention. Lilia Angelova-Mladenova lilia Thank you for your attention! Lilia Angelova-Mladenova lilia.angelova@enil.eu www.enil.eu