“Deinstitutionalisation essentially is a struggle for independence”

Inclusion Europe's director Milan Šveřepa talks about a seminar on deinstitutionalisation he recently attended in Romania.

“Deinstitutionalisation essentially is a struggle for independence”

A blog post by Milan Šveřepa.

On 11 April I went to Romania to speak at a seminar about deinstitutionalisation and people with intellectual disabilities. The seminar was organised by the European Commission and the Romanian authorities. I was there as a co-chair of the European Expert Group on the Transition from Institutional to Community-based Care.

I listened to the overview of Romania’s actions and plans regarding deinstitutionalisation:

Children

  • In twenty years (1997-2018) the number of children placed in residential settings in Romania decreased from 170.000 to almost 17.300. The peak of this process was during 2001-2007.
  • More than 5.000 children with disabilities still live in residential settings, of which 1.400 are in traditional institutions run by public authorities. Half of the children living in placement centres are children with disabilities.
  • Children under 3 years of age cannot be placed in an institution – unless they have a “severe” disability!

Adults

  • There are 18.000 adults in institutions (10.000 of them are people with intellectual disabilities).
  • The number of adults in institutions is rising, because children (especially with disabilities) leaving care end up in institutions. And because there is a general lack of community-based services in Romania.
  • Romania has a plan to close most of its “old” institutions. This plan is based on creating new buildings with up to 50 places.
  • The monitoring of the situation of people with disabilities in traditional residential institutions suffered a significant setback in 2017, when civil society organisations (CSOs) were banned from entering these institutions as watchdogs, despite a previous protocol between CSOs and the Ministry of Labour and Social Justice.

In my remarks at the seminar, I offered some comments and recommendations on the Romanian situation and plans to close institutions:

As at the previous seminar in Croatia, I said deinstitutionalisation means ensuring people can have healthy lives as citizens in full control of their life. It is essentially a struggle for independence.

Romania has already greatly reduced the number of children in institutions. There are also several organisations with the experience needed to help build new community-based services. And with EU-related opportunities (funding, knowledge transfer) at disposal, I believe many good things can be achieved in Romania in supporting people to live independently and in control of their own lives. To that end, I would suggest:

Prevent institutionalisation

This means support people with intellectual disabilities to develop the skills necessary for an independent life, so that people do not end up in institutions in the first place. Those leaving residential care should be supported to ensure they do not need to go back to an institution.

Deinstitutionalisation cannot just focus on one area (for example children) and neglect another (adults with disabilities). Many children (especially those with disabilities) end up in institutions when they are adults, if not supported properly.

Deinstitutionalisation means supporting families of people with disabilities. Otherwise what happens once they cannot provide the support anymore?

It also means using existing housing structures (homes, flats) to provide accommodation for people leaving institutions. In this way, inclusion is much more likely to happen than with new purpose-built housing for services.

“People in institutions do not need renovations.
They need encouragement and they need to live in the community.”
Elisabeta Moldovan at Hear our Voices conference 2017

Focus on all those affected

Providing support to those leaving institutions is crucial. This is about helping them acquire and develop skills for their new environment. It is about helping them establish and build reliable relationships with people.

It is also necessary to recognise the traumatic experiences living in an institution causes to people. And to help them overcome these experiences so as to prevent them from affecting how people function outside of the institution.

 

Focusing on those who are most often left behind – children with disabilities and adults with complex support needs – is essential. Deinstitutionalisation efforts need to start with them and make the new system and support services work for them. If they work for those with the most complex needs, they will work for everyone.

 

***

 

All three Romanian members of Inclusion Europe (Ceva de Spus, Federatia Incluziune and Pentru Voi) were present at the seminar. And they raised some crucial issues, among them the fact that Romania still takes away people’s right to decide about their own life. There was a promising legal capacity reform prepared three years ago, but since then no progress has been made.

They also talked about several of their new initiatives to help people leave institutions.

Romania must tackle the problem of institutionalisation now and make sure people with disabilities can live in the community, without exceptions.

 

Presentations and report from the seminar.

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