I have been stuttering since my childhood. During my elementary school, my stuttering was moderate. At that time I never considered it to be a problem.

In my first year of my high school I got a shock. I left my parents' home in Abidjan (Ivory Coast, West Africa ) and went to live with my brother in Koudougou ( Burkina Faso ) . There a Chinese medical team tried to cure the side effects of polio I had as a child. Unfortunately they were not able to do it because of the lack of materials. So waiting a eventual cure, I continue to walk with the assistance of one crutch.

Unlike Abidjan, Koudougou is a small town and it was very rare to meet a stutterer. So I used to do my best to hide my stuttering. This did not last very long. In high school pupils have to take a new course : English. Our English teacher always called on someone to read a passage and this pupil had to choose the next student to continue reading. The first time I was chosen, my fear of stuttering made my voice block and I was scarcely able to read my 2 or 3 lines. At once, a great silence spread in the classroom. The other students were very surprised by my manner of reading, and some started laughing. This was a great shock to me and from that day on, in order to tease me or to make people laugh some students would choose me.

I was very afraid in my English course, although I liked it and was among the best pupils in writing. Eventually, I grew to fear all oral courses. I become unable to read in French although in elementary school my reading was fluent. During the 7 years of my High school, I feared English and French courses.

After reading, I began to stutter severely in oral conversation. I liked reading books and telling the stories to my friends, nieces and nephews. Year after year I noticed that it became more and more difficult for me to retell the stories. I was anxious and was aware that I was developing a big problem. My stuttering was very severe. One day one of my nieces asked me : " why aren't you able to speak like us ? ".

Her question was pertinent. In fact I was unable to understand what is happened to me.

I began to search for solutions. I was quickly disappointed because I found that in my country and many African nations there were no therapists trained to help people who stutter. So I had to face that I was alone, without any help.

When I entered the University, I was immediately happy because I no longer had to attend English and French courses. But I quickly became disappointed when I learned that in the 4th, 5th and 6th years there would be oral reports. I was already afraid of events which would happen several years in the future. So I had to find a solution :

I was studying in the field of pharmacy. As I studied in this medical field I thought that I will find a professor who would have information about stuttering. So I began to ask all my professors who traveled around the world for meetings, if they had ever met a therapist for stuttering or heard about stuttering treatment methods. Unfortunately their replies were always negative.

In my 4th year, I had to give an oral report. Several days before, I would read in front of my friend. The beginning was difficult but a few days later I became fluent. I was sure I would be fluent in my classroom. But on the day of my presentation I was very disappointed. I was scarcely able to read my report. My professor was angry and said " I will give you 5 minutes to finish your reading. You have already taken enough time." With the time I was given, I was only able to read the first part of my text. During break, I could not stop crying, which rarely happened to me.

Some of the students were touched and came to comfort me. It was a sad day for me. I thought I was perhaps the only person in this world to have a physical disability (the result of polio) and to stutter. If by magic, someone could treat only one of my two handicaps I would not hesitate to choose stuttering. Although my physical disability prevents me from walking easily, it has never been a cause of humiliation for me. However, physical disabilities seem to attract the attention of more people than stuttering.

In my 6th year at the University I had to read a summary of my thesis in front of a board of examiners and the public. Because of my previous experience I was very afraid. I thought It would be shameful for me to earn the title of "doctor" without being able to speak and read fluently in the presence of several persons.

First I asked the director of my thesis if it was possible for me to not do the oral presentation. His reply was no. I had no another choice. I had to face this situation.

Two weeks before the presentation, while my friends worried about the questions that the board examiners would ask them, I was worried about my presentation.

I noticed that some journalists and elected officials have a good manner of speaking. I tape recorded the speech of some journalists and even the voice of French president ( Jacques Chirac ) from a French radio broadcast. I studied their manner of reading, their pauses, intonations etc ...Then I began to practice. I began by reading several times, under a tree, in front of my friend. I tape recorded my voice and studied it. The first day I was very disappointed, but three days later I was fluent in front of my friend.

I asked my friend to bring another person that I didn't know. I read in front of both. The beginning was the same . I stuttered severely. But two days later I was fluent. We added 5 persons and the process was the same. After I became fluent in the presence of the 5 new comers, I transferred the practices to the amphitheater where I would do my presentation. I asked 10 others persons to join us.

My presentation was in 6 days. My first practices in the amphitheater were very disappointing. I almost gave up, but my friends encouraged me. Two days later my reading was fluent. I asked my professor to come and in front of him I read fluently. He was surprised and happy. On the day of my presentation, it went well. It was my first successful public speaking.

An ancient Chinese said " a journey of thousand miles begins with a single step ".

These are my steps. The important thing is not to never fall down but to get up again each times we fall. In a country such as mine where there is no professional help, the person who stutters must be courageous in order to face stuttering without people with specialized training in treating stuttering. As my dear friend Russ Hick said " a stutterer's middle name should be courage." We often face more challenges in a single day than other people face in month or year.

Later I discovered through the Internet, the wonderful work being done around the world in the field of stuttering. By joining this work in my country (I created our national stuttering association.), my speech is getting more and more fluent. Nowadays people are surprised by my progress. Additional information about the work in Burkina Faso is available on last year's ISAD conference at http://www.mnsu.edu/comdis/isad5/papers/africa.html#burkinafaso/.

I live in Bolivia, South America, I am the mom of a 5-year-old boy that stutters. After one year of terrible anguish watching how my son's speech deteriorate without knowing what was going on and without being able to find real help, I traveled to the US in order to get some training. Once back home, the memory of all these feelings of helplessness and the sense that nobody understood what I was going through made me feel that I had to do something to help other parents find their way in helping their children.

My journey began 3 years ago when my son, Santiago, all of a sudden started stuttering. He was 2 back then, had had very early language development and by this time was exhibiting advanced language skills for his age. We looked for advice immediately . All we found were professionals that were as confused as we were. Most of them agreed that it was an emotional disorder and that he needed psychological help. Some said that the cause of his stuttering was that his motor skills and speech lagged behind his linguistic abilities and that he would outgrow it.

One year went by with my son's stuttering getting more severe and me watching with increasing pain and frustration. The fact that my husband also stutters helped me to realize there was much more to it than what I was hearing. The only way to help my son was to investigate on my own.

Through the Internet I reached many websites such as the SFA, NSA, THE STUTTERING HOME PAGE and many others. At last I knew that my little boy was facing what could be a life long disorder and that he needed the help of a specialist in childhood stuttering. I immediately traveled with my two children to Salt Lake City, Utah, where my son got intensive therapy for 3 months and I got training in order to continue with treatment back home. He responded very well to therapy. In a short period of time his speech improved a lot but there was so much still to do. Suddenly I was not only his mom but also his therapist, something that put a lot of pressure on me.

Once back to our normal life I had the mission to educate people that surrounded him on stuttering in order to insure progress. At the same time I felt the strong need to find other parents of children with a stuttering disorder that did not have the means to travel abroad and were going through the same emotional pain. Every time I had a chance I would talk to people about stuttering and how much it can affect children's lives hoping to find parents in the same situation.

Early this year I had given a presentation on stuttering at my children's school for the whole school staff. Not even one of the teachers had the slightest idea about stuttering or what they could do to help children with this disorder. It was a wonderful experience. All of them were very pleased to get this information so new to them and some came up to tell me they had cases in their classes. Right away I got in touch with those parents and gave them copies of resource material in Spanish from the SFA and shared with them things that had helped me deal with this situation, especially the importance of talking openly about this issue. I thought at this point I had found people with whom I shared a common bond and that we could find in each other a listening ear and support. Nevertheless I was deeply surprised and frustrated to find out they were paralyzed by the advice of the professionals working with their children -- basically telling them that only mentioning the word stuttering would make the problem worse. The parents were reluctant to talk again about this issue with me.

I felt completely isolated, with so many fears regarding my son's future, feeling the obligation to fix his stuttering and blaming my self his lack of progress. I thought over and over on how lucky the people were whose stories I had read in the NSA Letting Go magazine who said their lives had changed once they were part of a support group. I started considering attending the 2003 NSA Convention in search of additional training, hoping I would be touched in the same way.

My experience there was more than what I can express with words: I finally found a place where my feelings were understood and where I found answers to my fears. I heard so many stories that made me understand that as important as good therapy is for a child it is equally important for parents to be educated about stuttering and to talk openly about this issue, parents that love and accept you unconditionally and help you find within yourself the best of you.

I felt I had found a place where I could turn out for help and I wanted this for other parents. I came home with so much strength that at once had a meeting with my children's school board of directors, looking for help. They were very supportive and were willing to assist me in anyway they could. They not only offered the school facilities for the support group meetings but they also helped me by posting the advertisements, calling other schools and planning the first meeting. I talked personally with many parents. My feelings before the first meeting were fluctuating between excitement and fear because I could still sense that the ill advice people were getting about stuttering were strongly in the way.

The support group's first meeting was much more than what I had expected. For starters around 15 parents attended and after a while many of us were sharing openly our feelings. For the rest who were reluctant and afraid to express them, I am sure they at least found comfort from coming together. This is only the beginning and there are still many challenges to face, but just knowing I can make a difference in a child's life will keep me going.

For more than six years, I have been attempting to get one of the HMOs in my state, Minnesota, to change their policy excluding stuttering as a covered service.

I tried several different times. Initially I tried to get them to stop excluding stuttering therapy through the Minnesota Speech Language Hearing Association under the third Party Reimbursement committee of which I was chair. At least four different letters were sent. Sometimes there was no response. Other times they indicated that things would stay as they were written. I obtained a letter from a scientist who wrote why it was important to change their policy, input from the committee and again sent this information to the Medical Director of the HMO. We received a very brief letter indicating that they may look at it in the future, but for now they had decided to keep the policy as is.

I own and manage in a private practice in St. Paul, MN which is a small clinic that sees a significant number of clients who stutter. Until January 2003, I never billed this HMO because I knew of their exclusion. In January, I decided to start billing for the services of clients who had that insurance, believing I would get a denial which I could then appeal. Much to my surprise, I never got a denial on several.. They were reimbursing for stuttering therapy! I was surprised! I suppose I could have continued billing and continued to get paid, but it wouldn't have solved the problem that their official policy excluded the disorder of stuttering, or resolved my ethical unease of receiving payment for services that were officially excluded.

Therefore, I wrote the current Medical director, a new person since my original inquiries years before. Below is a copy of that letter with changes made for privacy reasons. I also sent copies to The Attorney General and the Minnesota Department of Health which oversees the HMO's in MN.

June 2003

Dear [Medical Director]

My Name in Kathleen E. Dauer and I have a private practice in St. Paul that provides speech and language services to many of your members. I am writing this to you to further discuss why XXX needs to consider changing their policy on exclusion of stuttering to a covered service as soon as possible.

First, for several years, The Minnesota Speech Language Hearing Association has asked you to change your policy on the exclusion of stuttering as a covered service. Thus far, you have not done so. I am uncertain if you are aware that all the other HMO's [in Minnesota???] cover this disorder. That is one reason you need to change your policy.

Second, within the last several months, my clinic has been submitting services for stuttering clients to get the denial in writing so my clients could discuss an appeal. Thus far, I have never received a denial. Recently, when I called XXX claims department, they said it was an error that had slipped through the system. An error that had slipped through the system, not on one client but on several, not on one date of services but on many. If it were not for my moral and ethical values, (by calling XXX and pointing out the error), it would never have been caught and you would have paid for stuttering anyway.

Third, rarely do we see a child with just a stuttering disorder. Often times, the disorder is associated with or a result of other disorders such as word finding, articulation and other language disorders which are all covered services under XXX' s policy. Sometimes, a child when first evaluated may just have an articulation or phonological disorder and then as we begin treatment and push their motor system, they begin to stutter which is also a motor problem. At that point in therapy, I would try to establish a fluent foundation for the child and then continue with the articulation therapy. When treating a child with these mixed disorders, it would be unethical for me to not deal with the stuttering along with the other disorders. Because you reimburse speech and language pathologist by the session only and because it is unethical for me to not treat that as part of the problem, the disorder of stuttering is again probably being covered for short periods of time anyway.

Fourth, stuttering is no different in nature than any other disorder you cover. The scientists studying this disorder are finding more and more evidence that it is medical, specifically neurological and genetic in nature.

Fifth, stuttering is a very treatable disorder especially in the young child and the school aged child. If these children are treated by a specialist of fluency disorders like myself, they will be remediated and will not need any further services. If left untreated, it will affect them vocationally, socially and emotionally. Many of our adult clients need psychological services as well as speech services because of all the emotional trauma that they have suffered because of their stuttering. I would assume the psychological treatment would be a covered service, but actually unnecessary if they would have been treated by a specialist earlier in their life for their stuttering disorder.

Because I specialize in the disorder of stuttering, people come from all over the state to receive services. They pay my clinic privately for the services. So your change in policy would not affect my clinic financially. However, it would help your members. For all the reasons listed above, please consider changing this disorder to a covered service for the benefit of all your members.

Sincerely,

Kathleen E. Dauer, M.S., CCC

CC: Attorney General Minnesota Department of Health

I did receive a letter back from the Medical director and he indicated that their research showed that their coverage policy is similar to that of several health plans and insurers in MN and different from others. He also stated that the Department of Health and the Department of Commerce had approved these documents including the exclusion. He indicated that their policies are reviewed on a regular basis and that they were in the process of such a review and they would consider the speech impediment issue in July of 2003.

After I received the letter, I immediately called the Manager of Managed Care system at the Minnesota Department of Health and discussed the issue with him. He urged me to send copies of all correspondences to him and to urge my clients to forward letters to him as well. Approximately one month later, I received a call from his assistant, who indicated that she had had a conversation with the Medical Director of this HMO and that they were discussing my concern. At the end of August, I received a phone call indicating that the HMO had changed their policy and would now be including coverage of stuttering effective August 15th and they would be forwarding information to participants and members.

I believe this happened for several reasons. One it was good timing. Secondly, I persevered and even through the years when they kept indicating that their policy would remain the same, I kept looking for opportunities to discuss it with them again. Third, I do think that the squeaky wheel gets the grease. I believe it helped to have submitted the services using the correct code, but having them make an error by not denying it.

In conclusion, this was a long, arduous fight, but in the end well worth it. I don't think that I have ever felt as proud as when I received the phone call indicating that a change was forthcoming.