From Confinement to Community in Croatia

Life for Croatians with disabilities meant being relegated for decades, often for life, in long-stay institutions, or stuck at home without adequate support.
In this interview Judith Klein, the director of the Open Society Mental Health Initiative, discusses a 5-year collaboration with the Croatian government to transition people with disabilities from two major long-stay residential facilities—or institutions—to community-based housing and support.

Until recently, what has life been like for Croatians with disabilities?

In Croatia, as elsewhere, people with intellectual disabilities have traditionally been institutionalized. Though institutions may have had the benevolent intention of rehabilitating people so they could go back home, they have failed. They became warehouses for human beings, often providing fertile ground for neglect and abuse.

As in other parts of Central and Eastern Europe, life for Croatians with disabilities meant being relegated for decades, often for life, in long-stay institutions, or stuck at home without adequate support.

As residents of these institutions move into supported housing in their communities, it means liberation from a lifetime of complete deprivation. It means choosing what to have for breakfast, going out, making friends. It means seeing people once branded as hopeless working with support in the open labor market; it means seeing people who never spoke in the institution singing in a choir. It means a normal life, the kind of life we all take for granted.

How did your initiative's involvement in Croatia begin?

Following the war in the former Yugoslavia, we became active in Croatia with the intention of helping to rebuild an open society. The Mental Health Initiative began looking for possible partners who were reform-minded and understood that institutionalization is not a solution for people with disabilities—that we need local support within communities.

We encountered some suspicion: Why would strangers come here? What was our motivation in advocating inclusion? It took two years to find the right collaborators. Professor Borka Teodorovic was the first person I met who had a clear vision that people with intellectual disabilities have the right to live in the community. We supported her to establish a new organization, the Association for Promoting Inclusion. Over time, API became the catalyst for creating community capacity and for deinstitutionalization in Croatia.

What does the deinstitutionalization process involve?

The word “process” is key! Deinstitutionalization is a complex effort aimed at dismantling the institutional system, while concurrently developing community-based alternative services. Genuine political will is critical to the success of the process. Real systemic reform that results in quality community-based services requires intensive retraining and then redeploying of institution staff. It also involves working with former residents to understand what they want, how they wish to live and then providing the right kind of support to make that happen.

To make it sustainable, the government must move funds from the institutions to the new services. While government ultimately finances community-based services, institutions need bridge funding to cover the time when both the institution and the new services are operating and the financing has not yet been redirected.

How did your collaboration with government develop?

Ultimately social services are the government’s responsibility. So we developed the initial community-based housing services in close collaboration with the Social Welfare Ministry. We advocated persistently over a two-year period to convince the Ministry to agree to pilot community-based services. This involved monthly meetings and sustained pressure on the Ministry.

Though at the time these new services were not set out in any legislation, the Ministry agreed to pay part of the costs from the very beginning. We advocated continually to convince the Ministry to finance the program fully. We knew we were taking a risk and that this effort could fail. But three years later, the community-based housing program was fully state-financed and part of Croatia’s social welfare system. 

Although deinstitutionalization is well underway in Croatia, what challenges lie ahead?

We mainly face challenges and resistance from two constituencies: staff who have worked in the institutions for many years, and a small subset of the residents’ parents.

This process forces staff to confront their own prejudices about residents’ abilities and to rethink long-established practices. Some cannot imagine their roles in a different system. Parents often fear that their child will cope poorly in the community. All these years, their child received care from some of the very staff that now resists the move. This amplifies their fears.

To address this, we are pairing parents of those who live in the community with parents who feel resistant, inviting skeptical parents and staff to visit community homes, and using film to document community living. We are also working with the Ministry to shape a clear and targeted public relations campaign about what the program really offers. 

Ultimately, our goal is to ensure that reform continues. Our strategy is to support other social welfare institutions that wish to transform themselves into community-based service providers. The idea is that there will be quality community-based alternatives to institutions in many parts of the country, making large-scale reform a reality. We are aiming to reach the "tipping point" while we are in this unique political moment.

What can other advocates and governments learn from this effort?

What we have learned is that there’s a right time for everything; that as funders and advocates we need to be agile enough to fund in different ways than we originally planned; that we should not be afraid to change tactics and employ multiple tactics concurrently; that we need to stop doing some things that aren’t working and do more of others that are.

In this work, one thing is certain: the right partners are critical. We look for brave people willing to engage in a task that seems daunting, even impossible. And then we stand behind them. This work in Croatia taught me just how important it is not to give up on what is a major uphill battle—because slim odds can still lead to transformative progress in people’s lives.

5 Comments

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Great work! But don't forget the children in the West who are also written off; it is cleaner, neater and well marketed by drug companies; but all countries are still writing off large numbers of their populations with low expectations and inappropriate medication.

Interesting. I believe we "have to work harder," to change the way we think, to make the world a better place. Transformation is not impossible endeavor if there is some economical attachment to it.

I work in the disabilities field in the US. We are seeing a lot of individuals come I from institutions into our community based programs. The individuals are thriving, but the process is slow. We are not merely talking about over medication, we are talking about individuals with disabilities ranging from mild to moderate autism, gross intellectual disabilities, that type of thing. This isn't about forgetting children and writing them off.

Dear Judith and team,

Let me congratulate you all for the wonderful work towards inclusive developments for people with disabilities in that country.
As some body with disability myself and also a Disability Rights Activist with 12 year plus working experience in the field of development for people with disabilities having worked extensively in Africa, Asia and now in the UK, I am indeed glad to come in contact with this campaign.

This was exactly the points i was making during my time at the Centre For Applied Human Rights CAHR at the York university where I served as a Research Fellow on INCLUSIVE DEVELOPMENTS for people with disabilities as I was among 10 Human Right Defenders selected globally for their Fellowship program.

Indeed, the institutionalization of people with disabilities is a complete exclusion, discrimination, marginalization, isolation etc from mainstream developments which is seriously affecting our developments around the world especially in those developing countries where disabilities issues are still been treated on cultural/traditional believes and practices.
Even though we are citizens of different countries and members of various communities yet, the persistent exclusions have made us look like strangers in our various places around the world.

Another disappointing aspect is the manner in which Mental health Client and their communities are been treated by some other members of society.
This is unfortunate and your campaign require strong support which I for one can assure you of as of this day.
If I have overcomed those negatives challenges and myths of from my detractors who felt I was useless and now been counted among global Activists then the sky will always be my limit in championing whatever campaign for our cause for inclusive developments without borders.

On this note, I hereby pledge my commitments to this campaign as am ready and prepared to join you all in taken this campaign forward in other countries too especially those developing ones.

I do have skills in Advocacy, fund raising, public speaking, program development/project, Enterprise development etc.

Thanks

Sahr Yillia
Disability Right Activist.

Your efforts in this direction are highly appreciated. I agree that more needs to be done, we also wish other countries could look very closely at what goes on in similar institutions- the political will and earnest conern for this segment of our populations, would bring a lot positive changes in the lives of the physically challeneged.

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