Deinstitutionalisation means ensuring people are in full control of their life

First published on Inclusion Europe website 19 March 2019.

I spent 2 days in Croatia last week learning about the situation of children and of adults with intellectual disabilities being segregated in institutions.

I listened to Croatian experts and activists at a seminar organised by the Association for Self Advocacy (a member of Inclusion Europe) and ENIL. The country made some progress by closing four institutions for adults with disabilities, but this progress seems to be stalling. At present, there are some 8000 people in institutions in Croatia (more on that below).

Senada Halilčević spoke about her fight for and independent live and for being included in society: Assistance of progressive service providers has been essential for her to gain independence, as well as the support of her friends.

Senada concluded:

I know my life and all what I do stand on very fragile legs. I am always afraid I might have to return to an institution and lose my freedom.

This is a sentiment shared by others who lived in institutions – and it needs to be properly taken into account, with the right support.

On day 2 I attended a seminar about deinstitutionalisation organised by the European Commission and the Croatian Ministry for Social Affairs. I was there as a co-chair of the European Expert Group on the Transition from Institutional to Community-based Care (EEG). The seminar was primarily about children. My role was to talk about deinstitutionalisation, and this is what I said:

Deinstitutionalisation means ensuring people can have healthy lives as citizens in full control of their life.

To guarantee that, deinstitutionalisation needs to:

  1. Prevent institutionalisation

  • There is an actual increase in the number of children placed in formal care in Croatia.
  • Poverty remains the main reason for that (according to the Croatian ombudsman, quoted by Opening doors). This is not acceptable.
  • Families must be the focus of support so they can provide good care and the right environment for their children.
  1. Focus on all those affected

  • Croatia has closed four institutions for children and four for adults with disabilities. The UN Committee on the Rights of Persons with Disabilities (CRPD Committee) notes the lack of effort to transform the care available to people with mental health issues. What is also concerning that the majority of the children still in institutions are children with disabilities.
  • Developing new support services is essential, and Croatia has made progress on that. This includes a newly developed foster care support system for children. Both the support services and foster care need to be monitored and evaluated to ensure they are truly effective in promoting inclusion and respecting the rights of their users and the children in care.
  • In Croatia, several thousands of adults with intellectual disabilities are placed in foster care. This cannot be tolerated.
  • Also, some hesitation to continue with deinstitutionalisation measures can be sensed in Croatia. The CRPD Committee notes the lack of desire to implement further changes. This is confirmed by representatives of civil society organisations in Croatia.
  1. Create a system based on support to independent living

  • Ensure the good examples that Croatia has already achieved (closed institutions, new support services, foster care for children) are the norm, not the exception.
  • Money is critical: It cannot be accepted that an institutional care provider receives twice as much money for one client as does a community-based service.
  • Also, access to EU funding for civil society organisations must be improved. Sometimes only the state-run institutions can apply for funding.
  • Direct involvement of those affected is very important. They must be present at the table when discussion such as this one are happening, and when decisions about the system and funding are taken.
  • Last but not least: There are 18,500 people deprived of legal capacity in Croatia. How are they supposed to take control of their lives?

There were also presentations of services or foster care at the seminar, one of them about a supported living service for people with intellectual disabilities from Czechia called Portus Praha.

It was a very interesting couple of days, where I could learn about examples of the progress made in Croatia – as well as areas of concern and things that need to be improved.

Inclusion Europe will continue to work with our Croatian members to ensure progress on these issues. (Currently, we are working together to address violence against women with intellectual disabilities, both in institutions and in the community).

As I was leaving Croatia, it came to my mind that our Europe in Action conference could not be more relevant at this time. There will be self-advocates (including Senada Halilčević) talking about independent living. There will be providers presenting progressive services that support independent living. There will be representatives of different countries and NGOs talking about the challenges in achieving much needed change.

All of this should make for an interesting discussions! I hope to see you there.

Further reading:

Croatia: End confinement of people with disabilities

The “Life after violence” project

Presentations from the event and a report on situation in Croatia

First published on Inclusion Europe website 19 March 2019.