Estonia. Visiting three institutions
We are home again, Cato and I. Last week we were still in Hamburg and before that in Berlin and before that in Helsinki -because the ferry to Germany went from there- and before that in Tallinn. And that's the country I want to write about this week.
Leaving Tallinn
I ‘m thinking a lot about the past few months and the people I talked to. I don't come home with a happy story. There is a lot of knowledge about children with an abnormal development. There are wonderful institutes all over Europe. From Spain to Britain, from France to Finland. Economies have only grown since World War II. Countries have become richer. But that has not resulted in a safer environment for our children, in better education or more choice, and I am very surprised at that. There is a gap between the new measures designed to bring about a more inclusive society and the institutions that have the knowledge to actually achieve it. It seems like governments are going their own way. Agreements must be met and that is the priority. The welfare of the child seems to be of secondary importance. We can already predict that the target will not be met but that will be up to the governments of the future.
So we were in Estonia, Cato and I. I have a friend from Berlin, Karin Hunger, who worked for eight years as a maths teacher at the German-speaking gymnasium in Tallinn. She goes to Tallinn every October to visit her friends and we had agreed that Cato and I would be there when she was too. It's lovely when someone knows the way. We scoured the old town, of course. But we also spent a week with her friend in Altja on the coast. We enjoyed the beautiful forests.
Karin has friends in Tallin, like Andrus Boikov, for example. Andrus arranged for me to get no less than three appointments at different institutes. An institute for adults with autism, an institute for simultaneous care and education and an institute for young adults with disabilities.
Estonia has been an independent country since 1992; before that -from 1939- it belonged to the Soviet Union. In communist Russia, disabled people were cared for in institutes. Disabled children were not educated. After 1992, Estonia started providing facilities for the disabled following the example of Western European countries. Parents wanted a better quality of life for their children, at home with the people who understand and love them. But that is achievable only if day care or education is available for the child during the parents' working hours. Estonia belongs to Europe and has therefore also embraced the shared goal of an inclusive society and the UN convention enshrining the rights of people with disabilities.
All children aged 7 to 17 must attend school and have the right to attend a mainstream school close to home. Children with a (learning) disability should be helped with an adapted curriculum, extra guidance, possibly be taught in a special class within the walls of the school or, if there is no other way, in a school for special education. Parents may choose whether to send their child (with disabilities) to a regular school or a school for special education.
As in the Netherlands and other European countries, the adapted or simplified curriculum is defined by the legislator through (adapted) learning goals.
As everywhere in Europe, in Estonia it is difficult to find a continuation after compulsory primary education. Sirje Norden's son Mart was diagnosed with autism when he was 13. He attended primary education at a school for special needs. After that, it was a search. His behaviour was considered too problematic at the existing institutions for day care for people with disabilities. Indeed, there was nowhere sufficient expertise when it came to autism. Moreover, by law, it was only possible to get day care in large groups with one supervisor for ten clients.
The day care centre Mart went to was for people with all kinds of disabilities. Eventually he had to leave there and a very sad search through institutions and even forced hospitalisations followed. (See website).
Because Mart was home a lot, Sirje had to stop working to take care of him.
Eventually, she decided to set up a day care centre in Tallinn herself. The Autistika Foundation opened its doors in 2014 with the help of many volunteers and is now the only one of its kind in Tallinn.
Sirje managed to convince the city council of the need and she was offered a space by the municipality in the basement of a government building in Kopli a district on the western side of Tallinn. The building was furnished with the help of donations and volunteers. Furniture they got from the Radisson hotel, looms from private donations, computers from Microsoft, Swedbank donated office furniture. Advice regarding activities, among others, they even got from the Netherlands.
Sirje also did something else. She managed to get a change made in the law! People with a diagnosis within the autistic spectrum, combined with a mental disability and behavioural problems are now entitled to day care in small groups; a maximum of six clients and three supervisors. This has ensured that Autistika now receives funding from the municipality. She worked on this for three years and the law was passed in 2017.
I get a tour in the centre by Doris-KatreTruuver's. Currently, three people with severe autism are offered a filled day here daily by three supervisors. The place is cosy and warm. The individual workstations offer safety. Doris explains that Autistika takes in people with autism who have nowhere else to go because of their difficult behaviour. At Autistika, they don't send anyone away. Autistika's clients often cannot tell themselves what they would like to do. So they are introduced to new activities. This is often frightening for them and requires a lot of persuasion. This can involve a lot of resistance, but when that is overcome, small miracles turn out to be possible. Doris tells how once they took a trip to an island. They had to take a ferry and one of the participants was terrified. The companions pretty much had to carry him on board. But once they were on their way he loved it. Anyone who wants to get an idea of what such challenges look like should watch the French film Hors Normes. Doris explains that five people is actually the maximum they can handle with three companions. People with severe autism and intellectual disabilities can be extremely resistant and are often very strong. But if you don't help them over the threshold their world won't get bigger.
There are currently only three clients because two clients have moved into a 24-hour service. Unfortunately, those people then have to do without this specialised day care.
Sirje Norden is now making efforts to also be able to offer a 24-hour service in the future. The big challenge is the staff, who need to be trained for this work. 'People find it too hard and sometimes, unfortunately, people are also afraid of the clients,' says Doris.
In 1996, the centre Käo, also a parent initiative, was started in Tallinn. This is an institute for children and adults with intellectual and/or multiple disabilities. It started as a day care centre, but since 2011 children can also attend school within the walls of this institute. I get a guided tour from Liina Pihol, one of the directors, and her colleague Marge Siiman. The cooperation between care and school is seamless, Liina explains. In the morning, all children receive school, in the afternoon there is day care. Every child always has access to treatment, music therapy, tactile stimulus processing, physiotherapy, etc. Many of the pupils are severely multiple disabled and dependent on wheelchairs.
The cooperation between care and education is special. In fact, the school is paid by the state and the care by the municipality.
The care department does not pay rent for the building, as the building belongs to the municipality. The school does pay rent. And all together under one roof. Three tutors and one teacher are responsible for six pupils every day. Currently, there are 34 pupils.
It is a collaborative working form that I fought for in Rotterdam but in the Netherlands it proved impossible and, sadly, also unwelcome
Many children are severely multiple disabled. Education therefore focuses a lot on communication and learning through alternative methods. The school has a wealth of equipment and wonderful therapeutic rooms at its disposal. As in Colchester, there are also small rooms attached to the classroom where pupils can unwind. There is a lovely atmosphere room with warm (adjustable) light and a beautiful wall-filling picture of a forest on the wall
The rocking sofas and 'cuddly beanbags' made me happy. Liina and Marge both know the story of autistic scientist Mary Temple Grandin who designed a special chair in which she was 'cuddled' in the way that was right for her. This 'cuddle-chair' is made in Denmark and I have been wishing for one for Acato for years.
Another important mission of Käo is to teach children about their place in society and their rights.
After compulsory schooling, pupils can move on to Käo's adult residential facility, but this is preceded by a new indication process. It does not always succeed in getting the young adults to stay, Liina and Marge tell us. While it is often actually good for certain young people to move on to the residential facility because the approach there is recognisable. The same communication and tools are used there.
There are children with autism at Käo but the target group does focus quite specifically on multiple disabilities. Teaching children with autism is only possible under conditions that then mainly concern behaviour.
Liiha tells me that Autistika, Sirje Norden's parent initiative, is still the only institution in Tallinn that has autism as a specialism.
In 1994, Tallinn municipality established a municipal institution: the Tallinn learning centre for disabled young people, Juks. At Juks, the main menu of guidance is Art, with a capital K. Juks is big. They have several branches. From the beginning, art was the means to enhance the happiness of life for people with disabilities. It also became clear right then that creativity supports young people's development, which is why it has become the Centre's priority.
Juks offers day care, all kinds of therapies, a group of clients work and learn to work at the centre, there is guidance to young people towards work and internships at companies outside or towards vocational training. Since a few years, there has also been counselling and rehabilitation for adults with disabilities. Juks has expanded its services over the years. The name was therefore changed to Tallinn Support Centre in 2011.
Juks also has a group for six people with autism but here, too, conditions apply to behaviour and cognitive abilities. Mart, Sirje Norden's son, visited Juks for a while but unfortunately could not stay there.
I get a tour of the building from Häli Metstak, coordinator of Juks' training centre.
It is a joy to walk around. All those beautiful paintings on the wall. We visit rooms where ceramics are made, there are looms, there is a sewing workshop.
I ask about staff qualifications. How do you get qualified staff who are also artistic? Häli explains that new staff must have art training in the first place, and then they can take free training alongside work to get the right diploma. Seeing my puzzled look, she says: 'But of course. We need these people, don't we?' That sounds logical but it is not possible in the Netherlands. Juks' work is highly appreciated and Häli says that despite the not-so-high salary, there is almost no staff turnover. 'All the people who work here have been working here for a long time. Because the work is so much fun.' It is a lovely building and the rooms breathe activity and life. Most clients have already gone home when I get there but on the top floor we find a small group still playing games. Reading and writing are also practised. In addition to art classes, education and general development are also addressed. 'Otherwise, the skills learned at school disappear again,' says Häli.
Also at Juks, the groups are small and there is a lot of staff. There are more than 100 clients per day and as many staff members, including the therapists, and support staff.
They are three wonderful institutions, but I do get the feeling that it is much harder for Autistika to exist. People with severe multiple disabilities are assured of the attention of the authorities. For people with severe autism, the possibilities are clearly more limited. This is also how it is in the Netherlands and I find that sad and in the context of human rights, incomprehensible.
What I take away from the visit to Estonia:
An offer of care and education that complements and supports each other barrier-free.
A low-threshold way, paid for by the government, to train people with other expertise also for care. Knowledge of care alone is often not enough to improve quality of life for people with disabilities.
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