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Navigating Inclusive Care with EHECADI: A Conversation with Hilde, Coordinator at Dominiek Savio

The third in our series of interviews as part of the EHECADI project is here!

The third in our series of interviews as part of the EHECADI project is here! We sat down with Hilde, coordinator of consultation services and occupational therapist at Dominiek Savio.

Dominiek Savio supports children, adolescents, and adults with disabilities. Within that there is a focus on people with a (neuro-)motor disability (affecting muscle tone, movement, posture, and gross/fine motor skills) or non-congenital brain injuries (an injury to the brain caused by an external force, also known as traumatic brain injury). A crucial part of Dominiek Savio is its centre, located in Flanders. They offer care within, as well as outside its borders, and that care is adapted to the client’s needs and requirements.

But what does it mean to work in a centre like Dominik Savio? What are the different aspects of such a job? What are some key things to consider when wanting to provide more inclusive and thorough help?

In this interview Hilde shares with us her professional journey, some of the many different aspects of her occupation, and the way that her job has evolved since she first started. She covers both internal and external key factors that can (and sometimes should) influence how things are approached.

  • Where do you work and what is your role in your current organisation?

Hilde: I work in Dominiek Savio. Dominiek Savio is a big institute for children, young people, and adults with motor disabilities, sometimes combined with mental delays or mild behavioural problems. We have children that come to school here, but we help twice as many kids in mainstream schools. So not all our clients come directly to the centre, a lot of the time we go to their own living space. Parallel to this we work in mainstream schools, and with families directly. So, we help children and people outside of the centre as much as inside, if not more.

My role is coordinator of the consultation services. We have a centre for consulting here. What does that mean? Sometimes we examine children to find a specific diagnosis, like DCD. Sometimes we examine the use of both hands, if they have cerebral palsy, or we go to people with acquired brain injuries, to see what the current possibilities are and how we can adapt the living area or the activity so that they can be independent whilst carrying it out (the activity). Consulting can also mean looking for assistive technology that can help lead a more autonomous life. I’m the coordinator of a multi-disciplinary team- a physiotherapist, a speech therapist, and some occupational therapists. We work in close cooperation with the rehabilitation doctor, and the children's neurological doctor. There is a lot of variation in what we do.

  • When you said that you sometimes work with schools and other establishments, does that mean you work there directly with the persons that have needs? Or is it rather than you provide some sort of training for the educators and staff?

Hilde: We do both. We work directly with the kids in the classroom or at home. But in the meantime, we also advise the teacher or other caregivers how to handle specific situations. For example, we have a project for people with acquired brain injuries; we work with the first line helpers, such as the woman who comes and makes food for the client with brain injury- we instruct them how to work together. We try to give information to the first line staff on how to aid the client by allowing for a combination of autonomy and support. We show them how we work with our clients so that they can replicate that in our absence.

  • And what do you do in your role, day to day?

Hilde: It varies a lot. Sometimes I have home visits, sometimes I work with the clients here in my office. Sometimes I have meetings with our staff. For example, we also advise therapists on how to work with specific clients. I also have a role that’s more advocacy related- I am in the board of the mobility device service of Flanders. We can make proposals for new mobility devices, a better compensation for the cost of the device, or another way to look at the use of a device. We are also motivating the government to pay more for smaller devices that are needed. A lot of children or people with cerebral palsy have the need for small devices that are never compensated for. For example, a special spoon, a special plate, some material to work with one hand- this is not paid back. But if you count everything you need, it adds up to a substantial amount, even for just a year. We are continuously trying to improve regulations around this kind of thing.

But yes, predominantly I do home visits, or go searching for partners to help in adapting homes. For example, yesterday I was in a family with a child with a severe motor disability. They live in a smaller house, and there is no garden around it, so the young girl cannot come into the house with her wheelchair independently. So, we ask ourselves, how can we adapt her environment to her? We must send a letter to the local government to adapt the footpath in front of the house. We work with a building company that adapts houses.

I also teach in a Bachelor of Education. They ask me every year to teach about physical developmental problems. So, this morning, I was at the University College of Bruges for two hours. Tomorrow, I go to a client’s home to work with his daily planning, something he struggles with a lot. After this I have a meeting about a new project, supported by the government. Then on Friday morning I will go to another client’s home. She has a traumatic brain injury. I observe her in her daily activities and do assessments of her motor and process skills.  

Since we have teachers that go into mainstream schools, we have a meeting with the teachers, with our mobile team, and the centre consultants where we explain to everybody what kind of work we do, what methodology we use, what materials and so on. That’s more or less how this week is looking for me.

  • That is really varied. It sounds very interesting to be able to work towards a common goal, but from so many different sides.

Hilde: Yes. Then we also have kids, and adults. That’s a whole different world, of course. But our centre is in the middle of the organisation. The other clusters, such as education of children, youngsters, working adults, then more mobile working… we are connected to everybody.

  • And is this the role that you always saw yourself doing?

Hilde: I started at the organisation as an occupational therapist, just a normal occupational therapist. And during the years, I became the one responsible for the occupational therapy staff. And then I became responsible for the whole division of children and youngsters working. Then at a certain moment, the director decided to split up children, adolescents, and adults, and they put another person on top. But then the centre had to start functioning. So, the physios, the occupational therapists, and the speech therapists are also divided all over the organisation, each of them in their own cluster, but there must be a connection between all of them because we work in fact, with the same sort of clients. So, the link between all the clusters is central- here in our group.

  • You said you started as an occupational therapist. Is that what you studied? And if yes, do you think that your studies prepared you well for your job? What do you think that your studies did well? And what do you think was maybe lacking a little bit, or you would have liked to be different.

Hilde: At the time I was studying it was a very wide education. We were not specialised for children, or persons with psychiatric disabilities, or elderly people. We could work in a lot of different situations. And in a way that’s good but you don’t know exactly what you need when you come and work here, in this centre, for example. In fact, I started my career in the psychiatric context.  I worked in different psychiatric hospitals. There, as well, I didn’t feel prepared. Lifelong learning is essential when you are an occupational therapist because each new context has different needs and requires different knowledge. It’s not easy to start as a young occupational therapist directly to a certain position. For the moment, it’s still very difficult to do it. I’m also teaching now, and I see how it is. I think there is a need for deeper knowledge. Maybe it would even be better if we have a specialised children’s occupation therapist, psychiatric, elderly, and so on. After my experience in psychiatric hospitals, when I heard of this institute and started working here, I decided immediately to follow some extra courses. I was not prepared to work with cerebral palsy or muscle dystrophy. It was completely new knowledge for me. I knew if I wanted to be a good therapist I would need to know more.  

  • What would you say are the biggest challenges and the biggest rewards to your job?

Hilde: For the moment? The biggest challenges… I think the rules of the government are a big challenge now. Adult people who need to care but don’t receive the necessary funding to organise that care, the waiting lists, terrible circumstances for people to live at home without any support, or with very little support. That’s problematic. For the moment this is what I struggle with most. As well as finding good staff in an organisation. For me the problem is not my actual job, I feel comfortable in supporting my clients. But to see how problematic the living circumstances are for people with disabilities, here in Belgium, that’s the problem. It’s not a nice situation. You see so many difficult situations. Parents that are disappointed that they don’t have good care, they don’t find the recognition for their problems. The living situations are not adapted for clients with basic needs, waiting lists are really problematic...

  • I see. So, the context and structures at play make it hard for you to do your job in the way you would like to.

Hilde: Yes.

  • And what would you say are the good parts about your role?

Hilde: When I work individually with clients, and I can really help to make progress in their life. We have a lot of clients that are really satisfied with our services. We also see that people become more independent when you use the correct approach. I have one client that when I went to their home they said to me, “You are the first service provider who asked me what I know and what I can do instead of always talking about what I can’t.” So as an occupational therapist we can reward the things that a client is able to do and motivate and help them to grow further. That’s really motivating. But we cannot always succeed because of a lot of things like regulations, money, time.

Still, when you examine a child, understand what the situation is, inform the school, offer care and help them in their development… That’s why we do it. But regulation is sometimes a big problem. And the waiting lists. Before, people could not enter in our centre because we had too many clients. But now we have free spots, yet people cannot access the necessary funding. They don’t receive their budgets.

  • The EHECADI project will work to develop a course for healthcare students to have a better understanding of societal needs and be able to increase their employability. What do you think students should be taught in their studies now, to equip them for delivering quality support in the coming years?

Hilde: Yeah, that's a difficult question. I think that they must be more aware of societal problems. If I look at the education of occupational therapy now, they see a lot of pathology, they see a lot of neurology, they see some kind of diagnosis, some methods to do occupational therapy, but they sometimes forget to put the client in society and see how society influences them. When you understand how society is working, you can also be an advocate for the clients in society. This- they are not prepared for. They need to think maybe a bit more politically.

Another increasingly important thing is to be aware of cultural differences. In Belgium, we have a lot of children from different cultures – life is different for them than it is for a typical Belgian or Flemish family. And many young people entering these professions are not aware of the differences that can exist.

For example, occupational therapists think that every child needs to learn how to eat with a knife and fork. But some Muslim people, or people coming from specific regions in Africa, can have the custom of sometimes eating with their hands. So, that’s good, right? It is important to be aware of how people live, how they organise their homes, what their customs are. Also, sometimes, in these households you don’t always have a table and chairs. Or people are used to sitting on the floor, with a sofa around, eating from a low table. So, you must take all of this into account when you are supporting the child. It's not enough to help a child eat with a fork and knife or sit on a chair. They need to also be able to eat with their hands, to be a part of their family’s customs. If you put a chair, you cannot expect the child to eat on it alone. So, cultural awareness, that’s important.

  • Our last question is, if there is one, what is the main thing that you realise was different to what you expected once you started practising your profession?

Hilde: I think I had a quite a good view of what I could do as an occupational therapist. I had a nice diversity of practical trainings, and I think I had quite a good idea of what occupational therapy was at that moment. I saw my profession evolving during time, so we have much more opportunities to leave the centre and work at home with clients, which I believe is necessary. I had the chance to be involved in several projects, new and innovative projects that go to mainstream schools, and to go to houses. So that's my vision on occupational therapy – it is changing over time. I still believe in my profession. I believe that occupational therapy can make a difference. That has not changed.