Europe in Action opening speech by Jyrki Pinomaa on 7th of September 2022.
Finally, it is here again. Our conference Europe in Action – and finally we can come together and meet each other again. On behalf of Inclusion Europe – a warm welcome to you all!
We want to end segregation. We want that people with intellectual disabilities are able to live where everybody else live, live in the community, be part of the community, as equal citizens, as equal human beings.
To make this happen, we need a legislation that makes it possible. But it is not enough. To make this a reality, we need to first challenge and then change disability policies throughout Europe.
The key question is how to make policy makers and decision makers really to understand the nature of disability services according to UN CRPD.
Life-long advocacy for understanding of individual needs
You all know that I have two sons with intellectual disabilities. Markus is soon 36, Robin is 31.
I have personally for years – if not decades already – in my home country Finland, been trying to accomplish a complete change of system, to make policy makers and decision makers and service providers to understand the meaning of individual needs and individual services.
The real meaning of person-centred – not just person-centred planning – but a person-centred approach in everyday life.
In service provision for persons with intellectual disabilities it is first and foremost a question of a home of a person and not working place of the staff.
To fully understand this and to be able to change the current way of providing these services, a profound systematic change is needed.
Too much today is still based on the medical model where care comes first and the circumstances of living fully – not to talk about flourishing of individuals with intellectual disabilities – are too often totally neglected.
We talk about self-determination of people with intellectual disabilities. Their right to decide. But instead of talking about them, and referring to a group of people, we need to understand what self-determination really means to Markus, what it means to Robin and what it means to each and every individual separately. And support them in their individual self-determination.
Nobody should live in an institution
In my home country, Finland, our government made about twelve years ago a very important decision: They decided that nobody should live in an institution in 2020. To support this important decision a special program was started – this program included financing the building of new homes for people leaving institutions. But also the building of homes for those moving out of their childhood homes.
During those years Finland also ratified the UN CRPD, housing was separated from service provision, financial support systems for living independently were improved.
The special program was quite successful what comes to creating possibilities for not having to live in a big institution. Hundreds of new homes were built or purchased every year during more than ten years. Now after 2020 we only have a few hundred people – mostly young children – living in institutions.
We now have in Finland:
- a system for building homes or purchasing apartments supported and financed by the government
- a system for the necessary service provision financed by the municipalities
- a system for base income financed by the government
- a system for support to pay the rent financed by the government
Yet, I am talking about a need for a systematic change. Why?
De-institutionalisation cannot just concentrate on the buildings and environments, it has to be taken into service provision.
Stop thinking of people with intellectual disabilities as a group
In a recently published article I told about Markus’ and Robin’s transition process from their childhood home to their own homes. We were altogether eleven families planning together homes for our children with intellectual disabilities. During that process we the parents involved in that transition concluded:
- “It is neither the floor plan nor the walls that make the house a home. It is the staff with a big heart that makes it a home.”
The most important thing in starting the systematic change is: Stop thinking of people with intellectual disabilities as a group and start thinking of them as individuals with individual needs, abilities, interests and personalities.
While setting the goal for no-one to live in institutions in 2020, our government should also have set the goal for a change in disability policy and have it based on individuals with individual needs.
I started today by saying that we have to end segregation. “End segregation” is the fifth thematic “E” in Inclusion Europe’s five-year five-E strategy. It is the theme of 2022. Just to remind you, the four other “Es” were:
We will continue with ending segregation also after 2022, because we have chosen it as the base of our new strategy:
Living in your own place. Having friends. Making your own choices. Being good at something. Belonging.
All people share these ambitions.
But people with intellectual disabilities and their family members all around Europe still face segregation, discrimination, and their rights are being denied on daily basis.
This prevents them from leading the lives they want.
- Too many people with intellectual disabilities still live in institutions
- Too many students with intellectual disabilities are segregated from mainstream schools
- Very few people with intellectual disabilities have a proper job
- Too many people with intellectual disabilities are not allowed to vote
We want to change this, and we will.
We know how to achieve it.
There are good laws and tools in many countries.
What is needed now is a change of disability policies to make them work for everyone.
Inclusion cannot be a “good practice” lottery.
Inclusion is a right, and it must become the norm in our societies.
Learn and share
When closing our last year’s online conference I said: “One of the greatest benefits of our conferences is to learn from each other and to share with each other. By sharing our stories, we can help each other a lot.”
I still strongly believe that this is true, so I urge you all to listen carefully to all our speakers in this conference. Listen to their stories. Talk to each other, share your stories with each other, meet old friends, make new friends. Make the best of finally coming together again.
This is what Europe in Action conferences are about.
Our work brings the voice of people with intellectual disabilities and their families where decisions about their future are made.
This has always been incredibly important. It is even more so with the Covid pandemic drastic impact on their rights and lives.
Being visible and vocal on issues directly affecting millions of people requires your support.
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