Henrieta Hajdeckerova, Director of the first home for a group of deafblind people in Slovakia, describes the challenges of making this dream become a reality…
“I’d like to say the important thing by a few words about the first, and so far the only, facility of its kind in Slovakia and about our legislative support.
Maják is the first facility for deafblind adults in Slovakia. The name Maják means ‘Lighthouse’ and symbolises the hope that was missing in the lives of deafblind people. The Maják project was started in 2003 upon an initiative of parents and specialists in the field of deafblindness and the home and services opened in 2007.
Deafblindness, as a special type of impairment, had not been considered in Slovakia until then – it officially had not existed at all. On the basis of widespread and intensive lobbying from specialists, the term “deafblindness” entered the legislation for the first time this year. The new law on social services has come with a new type of facility, “a specialised facility, in which social services are provided to a person with an impairment – deafblindness”.
This new type of social service has brought an individual approach to the client. The new law has also brought a new way financing, which takes into consideration the extent of a citizen’s impairment. For example, each client in the facility receives a different financial subsidy, in contrast with the previous law, by which each client, irrespective of the extent of his or her impairment, received the same financial package.
But despite those improvements in the law, which we consider to be a great success and a step forward in the field of deafblindness in Slovakia, not-for-profit and non-governmental organisations, such as our Maják, will not feel those changes to such an extent as state-run organisations. Not-for-profit organisations are still at a great disadvantage when compared to state organisations. They are perceived as private facilities, which may, but do not have to, exist. Neither the state, nor the self-governing region provide guarantees for the preservation of the existence of such facilities. So at “Maják” we are working hard to spread the word about the work we do!”
Living at Maják!
Janka Sarisska tells us more…
The start of 2007 became significant for young deafblind people and their parents in Slovakia. On 2 January 2007, parents brought their deafblind adult children to Maják and gave them an opportunity to live their own full-valued life, in which each individual is recognized as a unique personality. It was a huge event for the deafblind people, their parents, siblings and specialists.
In the past all 18 year old deafblind young people, after completion of the elementary school, either stayed at home or were in facilities for mentally disabled, without receiving the correct professional approach. In institutions for the mentally disabled, they did not have their own structured daily programmes; they did not get an individual approach, no adequate communication was used, and therefore they didn’t receive information either. When they were at home, parents were unable to secure for them a whole-day programme that would stimulate them and move give them a chance to make choices and have fun and success. Without the chance to expand their vocabulary in sign language and the young people returned to their previous negative expressions and stereotypes, and forgot some of their skills. Deafblind people need life-long education. They need their structured programmes, contact with their surroundings, communication and continual stimulation in order to keep developing. If that is interrupted, regression is the outcome.
After a three-year pause, the start of the Maják was not easy. The problem was also in the fact that we had a young team of workers in Maják. Before the opening of the group home they were trained for the work with deafblind people. But they didn’t have any practical experience in the work with deafblind people and they had difficulties in coping with problematic situations with residents. Some of them wanted to leave after a month – feeling they could not succeed. We worked hard to overcome this.
For a whole year, we worked with the clients’ on any negative reactions and built a system that wer based around their personal needs and interests. We created regular daily programmes; we used appropraite communication and did various activities. All this contributed to the fact that the first beneficial results showed after a year.
The second year of the operation was very significant. We wrote a project that included various leisure time activities, focused on the development of our clients’ personalities.
Deafblind clients do not realise what the concept of “leisure” is, so we organised lots of “taster” activities for them and believed that if the planned activities were offered they would realise they were some pleasant ones! Then they would enjoy them and look forward to being able to do them again.
The activities we chose – riding, art therapy, music therapy, bowling, dog-therapy and swimming we chosen to:
• support all-round development of an individual’s personality;
• create and influence social relations, social interaction and communication;
• support health, physical development and a healthy lifestyle;
• act effectively as prevention against the occurrence of pathological phenomena;
By participating in the activities, the clients gained:
• a feeling that they have achieved certain performance;
• opportunities to improve their body control;
• physical and mental challenges;
• strengthening of their self-confidence;
• an opportunity to discover a certain talent in themselves;
• an opportunity to achieve self-fulfilment;
The main specific feature of deafblind adults’ enjoying their leisure time is that they need assistance and supervision – and from people who really understand their own particular leisure activity.
A great plus of the project has been that we have put such activities into the hands of professionals.
The art therapy has been done by a fine artist, the horse-riding by an equine expert, the work with dogs by a trained canine therapist, the music therapy by an experienced therapist with many years of experience of work with multiply-impaired young people.
Through trying out such therapies and activities, we wanted to get our deafblind residents to the point where they can make their individual choices based on the interest and appeal they found in the activities.
So how did we get on with this leisure programme?
Art therapy – despite the fact the art therapist didn’t have any knowledge of deafblindness and he did not have any command of communication, he engaged the attention and interest of some clients on the first day! In the second meeting, they started to paint spontaneously, and so it was every day after that! The art theraptist became not just their art teacher, but also their friend.
Those who work at a higher level and have developed their communication know how to choose a specific topic, express their dreams and desires in pictures.
I’ll show an example. Juraj and Martin are young people, who grew up in an orphanage. They didn’t know their parents and they didn’t have the experience of living in a real family. In their hearts there is a hidden desire to have their own home and a close and loving person in it. That can be seen in their paintings. Juraj puts a little house or a young woman into almost every painting. Martin, in turn, paints roads, which gives us the impression that he is constantly looking for what he is missing. Peter’s drawings reflect his sense for the detail. Pavel is a devout young man and, in his paintings, he expresses his relationship with the religion. He depicts the crucified Christ or Virgin Mary. He started drawing for the first time when he was 40 under the leadership of the art therapist. He had never held a paintbrush in his hand before.
Clients who are at a lower level have fascinating artistic works, though there’s nothing specific in their pictures. It is just a harmony of colours.
Already the first art therapy meetings have shown that such an activity calms the clients. I asked the art therapist to tell his experience with his deafblind clients and what he thought about their mutual cooperation.
“Every time I work with new clients is a new start, a new challenge. One never knows in advance how the work will develop and what the results will be. It is very important to establish a working, human and artistic relationship with clients and to try to create in that spirit. When I open my heart, I can expect that also the client will adequately open himself, and then the connection occurs – a road on which we can create together, spend time and achieve some results. Each meeting is different and the results are different as well. What we have created in Maják encourages me and inspires to meet future challenges. In conclusion: No matter how a person is impaired, he or she is worthy of attention”
Horse riding induces positive changes in the clients. The training on a horse improves their coordination of movements, body posture, and sense for balance. During the ride, the client corrects balance, controls the horse by touch or by the bit, and thus increases his confidence and also self-confidence. By tapping the horse and hugging it, s/he expresses a relationship and thankfulness and joy.
We go horse riding once a week. The clients look forward to that activity and keep asking “Are we going to go horse-riding on Tuesday?” After horse riding, the young people return joyful and satisfied!
Each client experienced the dog-therapy individually. Some of them expressed anxiousness, fear and rejection. They gradually become friends and it was turned into play with a dog. But there were also clients who played with them, took them into their laps and were joyful. The therapist worked with them systematically and individually. She taught the clients to give commands to dogs and they reacted to them. There was very good cooperation with them. Then they were rewarded with food, a toy or stroking. Such situations encouraged the clients a lot and gave them self-confidence.
The non-governmental organisation Mayak cooperates with a music therapist, who started working with our clients when she visited the school for deafblind children. She wanted to achieve the clients’ independence in playing rhythmic musical instruments. When the clients managed individual games with the music therapist’s assistance, everything moved spontaneously to group music-therapy sessions.
Three clients started bowling under the leadership of a coach. This activity has absorbed them a lot. They go out for training once a week and they have taken part in a competition with sight-impaired sportsmen and women.
Swimming is a very popular activity for our clients. We make it possible for them to do that activity throughout the year. Swimming brings them joy, satisfaction and relaxation.
These activities have allowed the clients to obtain some new skills and to develop cognitive functions, social skills and emotional living.
We have managed to use such skills and capabilities for an integrated theatre performance with students of social work under the leadership of the art therapist and the music therapist.
The cooperation with the art and music therapists has led to the clients’ ability to fulfil their leisure time with artistic and music activities. Dog-therapy, swimming, horse riding and bowling also became the favourite activities for leisure. Our goal is to achieve our clients’ moving from therapy and interest activities to feelings of self-satisfaction and self-fulfilment. Currently we are at the stage of a transition from therapies to a conscious interest in these activities – or new ones they might discover!