Navarra: Gautena gives lifelong support to people with autism

Readingtime: 8 minutes

 

San Sebastian is one of the nicest seaside towns in Spain that I know. I have been there twice before and I still remember how difficult it was to find affordable accommodation. It is just too much fun to go there. This time it was no different. Cato and I ended up in a 'casa rural' on top of a mountain. 

 

We had to drive up a steep and very narrow winding road, worrying at every turn whether there would be an oncoming car around the corner. After all, you have to keep up the pace with such a heavy van. When I arrived, I immediately thought: Well, I'm here and I am not going anywhere. But the appointment was the next morning. So I decided to overcome the fear of steep roads by driving down to the boulevard of San Sebastian right away. I managed to find a parking garage close to the beach that was high enough for the bus. The small beach near the city centre was crowded but the atmosphere was fantastic. Cato and I had cake and tea on a terrace and then visited the supermarket for dinner. And then up that damned mountain again. According to google, Gautena, the organisation I was going to visit, was only 20 minutes away. Yes, sure.

 

Next morning I am expected at 09.30 by Imanol Rodríguez Carretero, head of the day care centre. He saved the whole morning for me. Around noon, I will meet the director of Gautena for an interview. While I am waiting in the hall, I was much too early of course because I didn't believe Google, the residents of the house across the street come in. There are staff waiting in the corridor and they all take one resident under their wing.

Imanol, a young Basque in his thirties, comes to fetch me and first shows me around the building. By now, the people had spread out all over the building and are working in small groups with one or two supervisors. Imanol knows everyone by name and he introduces me to all the residents. Everywhere there is a small conversation or a hug. I enjoy the cosiness that radiates, the affection that is clearly mutual.

 

What am I looking for? What do I want to know? How do these people live here? Imanol explains. At Gautena, they find it important for people with autism spectrum disorder to be among people, in society. So all the activities they do, they do outside. For example, there is a therapeutic gym in this building, but for regular sports, like swimming, they go to the swimming pool in town. And when they come back from swimming, they put their swimming costumes in the washing machine themselves. That way, the activity has a head and a tail, Imanol explains.

 

The day starts with a meeting with the supervisors, with each other, in small groups. Then the plans for the day are made. What does the day look like? What are you going to do?

The people from the residential facility across the street are all severely autistic and have various other disabilities. One of the young men is blind for example. A lot of care and personal attention is needed. But there are activities every day. There are minivans to take everyone everywhere.

 When we are in Imanol's office, he tells us about the importance they attach to people's happiness in life. It is measured using the Saint Martin Scale. This measuring instrument, which is now used all over Europe, was developed in Spain thanks to the Fundacion Obra San Martin.

  

‘Good communication is the most important thing of all,' says Imanol. The people with autism cannot fill in the questionnaire themselves. That has to be done by people who know them well. Parents and supervisors, for example. It is very important that there is good contact with the network surrounding each resident. And if it turns out that someone is not happy, they try to do something about it. Imanol himself visits all the departments during the week to see and hear everyone.

 

We walk across the street to visit the residential facility. It is a house with two flats where seven people live in each flat. Everyone has their own room. They are cosy rooms, furnished with care. There are always two supervisors present. During the day, the residents go to their activities, but if you don't feel well, you can stay at home too. Imanol looks at me in surprise when I specifically ask about this. ‘Of course!' he exclaims. ‘This is their home!’

 

 

I know from initiatives in the Netherlands that staying at home is usually not possible because there is nobody in the houses during the hours that the residents are in day care. There is simply not enough money to pay for that. It is one of the things that keeps me busy. How do you give someone who needs so much care the feeling that he is at home and not in an institution with all kinds of rules? But here, for these people it applies that they can feel at home at the residential facility.

 

This department of Gautena - the day care centre - has about 130 clients. Ninety of them live at Gautena, the rest live at home with their parents. The way of living at Gautena is not suitable for everyone. I tell Imanol that Cato would not like to live in such a way, among other people with disabilities. She always gets angry when she sees someone with a clear deviation and she will not be nice to that person. In professional terms, you could say that it overstimulates her. Imanol recognises that there is no solution for a certain group of people with autism. They continue to live at home with their parents.

 

After visiting the beautiful residential facility, we get into Imanol's car and drive to a day care centre in the city. Imanol explains that they have abandoned the idea of one large institution where everything is. It is better to have several smaller facilities spread throughout the region. The activities are as much as possible out in the community.

The centre we visit has just opened its doors. It consists of a few cheerfully painted rooms and a kitchen. The groups here are larger and the people need less care than the group of residents we visited earlier. Most of them live at home and only make use of the day care centre. The first activity here is also to discuss what they are going to do today. This group will first go for a walk and then go shopping for lunch. 

 

 

After this nice and interesting morning, Imanol takes me to the director of Gautena, Amaia Lopetegui. I can ask her my questions about the younger group that Gautena serves, the children with autism who go to school.

From the very beginning, Gautena's goal was to help people with autism for life. The organisation was founded in 1978 by parents and Amaia says that the board still consists only of parents. And that is also the case with the organisations for people with Down's syndrome and the organisation for people with brain paralysis These organisations are even older than Gautena. But they still have only parents on the boards.

 

Amaia explains that she is not only the director of a care institution but also of a school. This school has 21 classes but does not have its own building. Those 21 classes are accommodated at 21 regular schools, public and private. Twenty-five years ago, in this region, they already started to set up small classes with two specialised teachers for a maximum of five pupils with disabilities in regular schools. Imanol had already told me about it in the car. The purpose of these classes is mainly to bring children with disabilities in contact with their peers and vice versa. Imanol was very passionate about it when I asked about the cognitive level a child should have to be in such a class. It is not necessarily about achieving a certain level, he explained, but about the children growing up with each other.

 

Amaia says that not long ago a locally famous singer was given the opportunity to promote a charity in a promotional event. He chose Gautena. Amaia asked him why he had chosen Gautena. This singer then told her that he as a child had been at school with such a special class and that he thought back on it with so much pleasure. ‘It is good for both parties,' says Amaia, 'all the children benefit.’

 

Many of the teachers who work in these classes have experience in Gautena's day care and leisure activities like weekends and summer camps.

Amaia: ‘And because of these special classes, we have known many of our residents since their school days. At that time, we already supervised them. I know when we need more residential houses because I know which children are in the schools.’ 

 

When I ask about the financial side of the organisation, Amaia explains that when the various Spanish regions were given more autonomy at the end of the 1970s and were allowed to shape healthcare and education according to their own ideas, Gautena was already there. The Basque government decided to continue working with the organisations that existed and to make use of the expertise that was available. That immediately put Gautena in a very good position to become what it is today. An organisation that offers wide-ranging help to all age groups. ‘Navarra is a successful industrial region. Our regional government spends just over half of its tax revenues on social issues.'

 

((At this point I am reminded of the transition of care in the Netherlands in 2015. When our beautiful AWBZ (general law on special medical expenses) was abolished and care for almost every person in need became the responsibility of the municipalities. The total budget was cut by 3 billion and care has been a product that has to be bought at a bargain ever since. Waiting lists are endless)).

 

In total, Gautena helps just over a thousand families. There is a diagnosis and treatment department, there are 21 school classes for about a hundred children with autism, there is day care for both residents and people living at home, there are protected living and leisure time activities.

The last-mentioned branch of Gautena organises summer camps and weekends for people with autism.

 

There is, however, a side note. Young people like Cato cannot find a place to live here either and usually stay at home with their parents. Like in the Netherlands, it is possible for people who live independently to receive outpatient care, but the intermediate form that I am looking for does not yet exist. Amaia mentions that 24-hour guidance for individual living might be very expensive. Maybe the right form has not been thought of yet. I am thinking of Françoise (see previous post) and keep on hoping.

 

 

At the end of July Amaia is going to Wales. It seems that the way in which the government of Wales facilitates care is very special. Wales was the first country in the UK to develop a national approach and publish a strategic plan for people with autism(2008)

Amaia is faced with the same problem as we have in the Netherlands. She has to deal with three different ministries: care, education and social affairs, which all seem to operate separately. ‘They do things differently in Wales', she says. And she is going to see how. She promises to tell me about it when she is back.

 

What do I take away from this very nice visit?

 

- Integrated classrooms in the regular schools for handicapped children, focused on development and mutual contact between the children

- Lifelong support from the very beginning

- Small locations throughout the region focused on activities outside in the community

- A care director who is also a school director

- Parents in the board