The Stuttering Information Center of Denmark
About the presenters: Per F. Knudsen, M.A. in psychology and since 1994 director of the Stuttering Information Center of Denmark. 46 years old. Has been active in the Association for Stutterers in Denmark for 20 years. Has worked on a project about childhood stuttering in 1989-1992 together with a colleague. Was Chair of the Organization Committee for the 3rd World Congress on Fluency Disorders, Denmark, August 2000.
Tine Egebjerg, speech therapist and since 1994 professional staff member at the Stuttering Information Center of Denmark. 39 years old. Has graduated from the University of Copenhagen in 1990. Has from 1987-1994 worked as a speech therapist with stuttering children, youngsters and adults. Was last year involved in the development and execution of a further education in stuttering in Denmark.
The Stuttering Information Center Of Denmark
by Per F. Knudsen and Tine Egebjerg
from Denmark
In Denmark the treatment of stuttering takes place at Speech Institutes in the counties (for adults) and at Pedagogical Psychological Counseling Offices in the municipalities (for children). Denmark is divided into 14 counties and 275 municipalities. It is free for people to receive treatment; you just have to make the inquiry in the county or municipality where you live.
Unfortunately, it is not the same good treatment you will be offered everywhere in Denmark. Some of the speech therapists do only see a single or very few stutterers per year — if any. This often results in lack of knowledge about stuttering — and certainly in lack of experiences. It also results in too many speech therapists feeling incapable of properly treating persons, who stutter.
The education in speech pathology takes place at the Royal Danish School for Educational Studies (is under way of being changed to the Pedagogical University of Denmark) and at the University of Copenhagen. But fluency disorders take up a very limited part of the speech pathology study.
Furthermore no institution had it as an aim to give speech therapists further education in fluency disorders, and there had been no place where speech therapists could be supervised if they had problems regarding treatment.
Also there have been absolutely no institutions with the task to pass on knowledge about stuttering to stutterers, professionals, semi-professionals, the public institutions, associations, ministries and the public in general. The Association for Stutterers in Denmark is very small and managed by people who uses their spare time and therefore are unable to deal with the big task of disseminating information about stuttering widely and professionally.
So - when the educational system, the treatment system and the surrounding professions shows little or no interest in stuttering — and the Association for Stutterers have so little power of penetration — then prejudices and lack of knowledge about stuttering in society will be part of the everyday life for stutterers and their families.
This is some of the fundamental reasons for establishing a center like The Stuttering Information Center of Denmark.
Purpose
The purpose of the center is to make better the prevention and treatment of stuttering in Denmark, and to improve the conditions for people, who stutter, in general. To fulfill the purpose the goal of the center is to secure, that these individuals, professionals and institutions will receive up-to-date information about stuttering, stuttering problems and treatment of stuttering.
The way to reach the goal is to systematically collect, adapt, develop and pass on knowledge about the causes, the development, the consequences, the prevention and the treatment of stuttering.
Organization
The Stuttering Information Center of Denmark was established January 1, 1994, and is located in Copenhagen. The Center is nation-wide and has a yearly budget on approximately 200.000 US$. There are 4 people employed at the Center: a director, two professional staff members, and a secretary.
The work at the center
After establishing the center we began to inform the speech therapists and others in Denmark and abroad about our existence.
In the light of this a mailing list was elaborated and a database for books, articles, videos, etc. about stuttering was established.
We also established a library.
To get more information about and from our primary target group (the speech therapists), an inquiry about the present level of knowledge and the treatment of stuttering given by speech therapists in Denmark were carried out.
We also began to plan and carry out projects addressing more specific areas of the stuttering problem.
We started out by elaborating some basic information in the shape of leaflets — our first leaflet was about stuttering in general, it was distributed to Speech Institutes, Pedagogic Psychological Counseling Centers, and Libraries. Since then a leaflet about stuttering in school and education, a leaflet about stuttering and employment and a leaflet about stuttering in small children have been elaborated.
During the last four years the center has carried out different projects e.g. a project concerning stutterers and employment and stutterers in the school and further educational system. We have also elaborated various booklets on certain specific areas in the stuttering field such as stuttering and the mentally retarded, stuttering and cluttering and a booklet with stories that deals with problems and good experiences in everyday life told by adult stutterers.
Around the Center we have established different groups and networks, which in different ways support the Center and profit from the work of the Center. The network and the workgroups are open for all professionals working in the field in Denmark.
The aim for the workgroups is to bring professionals together to discuss different problems and subjects.
As part of the highly regarded collaboration between the Center and the professionals working in the field, an evaluation outline dealing with outcome measures in connection with pre-school children in treatment has been elaborated. An evaluation outline for schoolchildren is on it’s way right now and plans for an evaluation outline concerning adults is on the drawing board.
Apart from the many telephone contacts every day our primary communication outwardly is a newsletter, which is published 4 times a year.
All these initiatives and other initiatives not mentioned has made it possible for us to get in contact with a lot of the people and institutions to whom we would like to offer information about stuttering and stuttering problems now and in the future.
Experiences and evaluation
If you want to evaluate the importance of the Stuttering Information Center of Denmark, you have to know, that before the establishing of the Center there were no institution or organisation with the purpose of collecting knowledge about stuttering in Denmark and abroad or to develop the stuttering field in Denmark. The Center was therefore received eagerly by both professionals and The Association for Stutterers in Denmark.
The work of the Center has in several ways been very valuable for the stuttering field in Denmark.
We know that the support available at the Center is highly appreciated. We also know, that the support has a positive influence on the services given to stutterers, parents and others involved in the individual cases.
What we also have experienced is that the focus on stuttering issues has raised among professionals as well as among the public in general.
This is, in our opinion, partly due to the written materials the Center has published and distributed, partly due to the network and workgroups the Center has established, and partly due to the information the Center has made available for the public in general.
By putting a lot of time and effort into the idea of wanting professionals to meet on a regular basis we now have some very powerful networks. This means that professionals from all over Denmark meet each other and exchange knowledge and experiences. This again means that there is a continuing development of knowledge and treatment through out the country.
But the good results of the initiatives is not only due to the specific initiative it is also due to the way the Center has met the different target groups. When one meet people open minded, without prejudice and with an honest wish for co-operation it provides a breeding ground for exchange of experiences and co-operation. We believe that this way of meeting people has had a great influence on the way the Center has been received and accepted by the professionals as well as by the public in general — and that is one of the reasons for the following experiences and results.
The Center is build on mutual confidence. Because of that the presence of the Center creates a sense of security for the professionals. The professionals know they can find help — or find ways to help — from the Center when they face difficulties in their work.
The newsletter has been another important part of the assignment to put stuttering on the agenda. Time has shown, that the newsletter is important for the professionals obviously because it provides them with information but also because the presence of the newsletter at the working places both gives the stuttering field — and the professionals a higher status within the speech and hearing field and among their colleagues than ever before. In the past years it has become popular to work with stuttering and stutterers.
Through workshops, courses and conferences the Center has played an important role towards increasing the qualifications of the professionals. The Center has during the 6 years of existence invited several well known professionals from abroad to Denmark to present their way of working with stuttering. To attract as many as possible of the Danish professionals to participate in the workshops, courses and conferences we do everything we can to keep down the expenses for the participants. In fact, this is a politic the Center has followed all the years and a politic which is general for all services offered by the Center.
During the past 6 years the role as a "diplomatic mediator" has resulted in many inquiries to the Center from professionals who aknowledge their lack of knowledge asking for general information, specific knowledge, literature and contact to experts so they can improve their knowledge and skills. The Center continuously get a lot of questions, and as a result of finding answers to all these questions a database has been developed. The database holds - among others - information about specific questions e.g. questions about stuttering and Giles de la Tourette Syndrome, stuttering and phonology and stuttering and hypnosis. This database is of course under permanent development.
The close co-operation with professionals has also resulted in professionals taking part in the work with different projects. Some of the professionals have during the project period been employed at the Center (part time or fulltime), and others have worked together with the Center as part of their work on their local institution. Some even uses their spare time. It has been successful both for the professional, for his or her institution, and for the Center. The professionals have gained much knowledge, the institutions have more qualified professionals employed, and the Center has not worked in an "Ivory Tower"-situation, but has developed and disseminated knowledge which we on account of this co-operation know is useful for the professionals all over the country.
The Center has a very large collection of books, papers and videos on stuttering. This collection is mainly for our own purpose, but everyone are welcome to come to the Center and use the library . This means that students often contact the Center when they are about to elaborate papers or dissertations looking for literature, but also to look for interesting subjects, discussions, referral to experts and so on. We can help the students on these matters, and have done this several times during our existence. Also professionals come and look for specific information in connection with cases and sometimes pedagogic and educational staff seek information about stuttering.
During the existence of the Center three Users Conferences have been arranged. This gives the consumers of the Center a possibility to discuss what issues they would like the Center to focus on in the future. The main issues have all three times been "better education" of the professionals and sufficient treatment to all stutterers regardless of where they live. In Denmark most of the professionals are teachers with a 1_ year further education in speech, language and hearing. Stuttering has a very limited part of the education, and a demand from both the professionals and the consumers has for many years been more comprehensive education in stuttering. It is difficult to change the education system and it will take a long time, so meanwhile we decided to focus on creating an in-service course together with the Royal Danish School of Educational Studies. After more than one year of preparation we established a 1-year in-service course for speech therapists. The first course took place in 1999-2000. The evaluation of the first course showed a very high benefit for the participants, and the majority of the participants were very satisfied with the course. The next in-service course is planned to take place in 2001/2002.
Stutterers and especially parents of children who stutter often call the Center seeking for information about their rights in the treatment system, or for advise or information in case of problems with treatment or lack of treatment. This contact is important for us because we can see what kind of problems the stutterers and their families face, when they seek help. We know the treatment system in Denmark often are faulty, due to lack of knowledge among the professionals, due to insufficient education, and due to need of resources. By the documentation from the stutterers and the parents we are able to inform the treatment system and the political system about the deficiencies of the treatment system. Which — hopefully — in the long run will improve the treatment for stutterers.
Stuttering has always been a concealed problem or handicap. Very often stuttering is a taboo. Together with the professionals and The Associations for Stutterers in Denmark the Center has been very open about stuttering. The results of this is, that stuttering has been discussed in the media much more during the last 6 years than ever before. The idea behind this is to decrease the amounts of prejudices and myths about stuttering among the public in general, and to replace the prejudices and myths with knowledge and understanding. This process has now been initiated.
The Center are often visited by professionals and institutions from other Scandinavian countries. They find the organisation and work of the Center unique and many professionals in the stuttering field wants to know more about how the Center works. We also mail our newsletter to many professionals in the Scandinavian countries. We are of course very pleased with this contact. The contact gives us valuable information about the treatment systems in these countries and it enables us too look at our own system in a more broad perspective. A lot of this is of course due to history and the fact that e.g. people from Denmark, Norway and Sweden can understand each others languages. Which again has resulted in the fact that materials produced by the Center can be used by professionals and consumers in Sweden and Norway. Some of the materials though have been translated.
Our assessment is, that the diplomatic and trustful way we have chosen to work, the establishing of the networks, focusing on the importance of the professionals to meet each other to discuss stuttering and stuttering treatment, and of course elaborating projects and materials together with colleagues from the treatment system, has had a considerable importance for the higher level of knowledge and experiences we find in the stuttering field in Denmark today.
This positive evaluation is of course our own, but it is also backed up by all the professionals who have expressed their viewpoints about the Center during the last two to three years, and by The Association for Stutterers in Denmark which hope the Center will continue its work forwards.
August 23, 2000
