Creating a Life in Community

Sofia Reyes leads the Mi Casa project in Spain which is a major development in deinstitutionalisation.

Sofia Reyes is the coordinator for the Mi Casa project, Plena inclusión’s contribution to the Spanish Deinstitutionalisation Strategy. In this interview Sofia explains the background to Plena inclusión's work on deinstitutionalisation and what makes Mi Casa such an important development.

Q: Why is Mi Casa: a life in community important?

I believe it is important to go back to 2013, when Plena inclusión began its Transformation Project, to support its members in the transformation of their centres and services, towards greater personalisation and a richer community life. Throughout these years we have been on a journey with more than 900 centres and services in this change work.
By 2018 we also began to launch various pilot projects to share certain inspirations or ideas that we had, to test and then share our learning together. These included:

There were also two important “We Are All” research projects, from 2017 and 2018, that Plena inclusión carried out with the University Institute of integration in the Community (INICO) at the University of Salamanca, which made clear that too many people with intellectual and developmental disabilities in Spain, who had higher support needs, ended up in institutional services.

So Mi Casa: a life in community is the result of all this work that Plena inclusión has actually been carrying out for many years.

Now it is important because we have the money to experiment with how long-term care for people with intellectual disabilities with great support needs should be like. We can also test and evaluate our hypotheses with data and evidence. Never before in the entire history of our organisation have we had the possibility of doing work with such significant funding and firm political commitment at the national level to change public policy.

Q: What is different about this project, with respect to freedom or independent living, to the work we have done in the past?

In this project we have built on our learning from all those freedom and independent living projects that we carried out in Plena inclusión. When we talk about independent living projects we are talking about the life projects where each person chooses where, when and with whom they live. These types of projects have also focused on people with great support needs.

Perhaps one of the differences is that now we are collecting data, measuring results throughout the entire process (before entering the project, during and after), so we can have the evidence we were talking about. Along with this, this project has developed two new professional roles: the facilitator and the community connector. So now we are focusing on becoming experts not just in the chosen life of the person, but also in the place, neighbourhood, where the person lives. This means we can increase the personal relationships of people and support them to contribute to what happens in their communities and their neighbourhoods.

Q: What does it mean for people with intellectual and developmental disabilities who are most in need of support, that Mi Casa: a life in community exists?

Last week we were participating in a conference of the Ministry of Social Rights and Agenda 2030, and a woman came with high support needs. She has lived in an institutional service for 33 years on the outskirts of Albacete, and now lives in an apartment in the centre of that city. They asked her this same question and she said that without this project and the Recovery funds from the European Union, she would never have had the opportunity to have her life in her hands again and to be able to live the way she wants to.

So this project means giving these people back control of their lives, allowing them to have a chosen life and develop it like all citizens, in community, and it restores people to the places from which they were taken in the past.

Q: What will this mean for all the professionals and organisations that participate?

Well it will be a major process of transformation: a change of views, beliefs and values. For in the current health and care systems power and control lies with us professionals, the ideology of the centres is based on protection and meeting needs, so of course, by putting people at the centre of things, it changes the way you relate to them, your expectations, so you can put on “new glasses” so you begin to see people’s potential and strength.

Many professionals say that this project is making them expand what the word “dignity” means and our expectations of people. We feel that professionals and organisations are becoming much more ambitious about what people's lives should be like. And the project is making our members open up to the community and letting them see what is really happening.

Q: What factors does the project want to explore and experiment with in relation to long-term care public policies? What hypotheses are being considered?

We are testing several hypotheses. One is that people with intellectual disabilities and great support needs can have a chosen life, have control of it and do so in a community, and that this will increase the quality of their life in the 8 dimensions that we have established. That is to say that as a whole it improves people's lives.

Along with this, we believe that your participation and contribution in the life of neighbourhoods will also contribute to improving communities, making them much more inclusive, welcoming, supportive and fair. And that diversity in society contributes to increasing the degree of humanisation.

What we want to explore is what the life of these people with great support needs should be like, that the only alternative they have should not be the institution but rather having a life in the community.

We want to know how to make this new approach cost-effective, so that it can be a model that is completely acceptable to the service portfolios of the different autonomous communities.

The original interview with Sofia Reyes was led by Fermín Núñez, this translation was by Simon Duffy.

You can read the interview with Sofia in Spanish on the Plena inclusión website here:

Article | 08.05.24

community, Deinstitutionalisation, Inclusion, intellectual disabilities, Spain, Article

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