Monica Lenhardt: "For insurance companies, we collected evidence that cochlear implantation works"
Monica Lenhardt, 73, Kohlear Business and Customer Relations Manager, 1999; Doctor of Philology, Psychology and Philosophy. Since 2002, he has been chairman of the Professor Ernst Lenhardt Foundation. We are sitting in the lobby of CityHotel in Kiev after Monica Lenhardt’s meeting with her parents and talking about current issues of cochlear implantation in Ukraine and world experience.
- Many parents tried to break through to you today to communicate in person. And also - specialists and initiators of public projects. Do other countries also want personal communication or a similar reaction only in Ukraine?
Yes, in many countries the same - in Armenia and Kyrgyzstan. The audience is very happy when I come. Because you can touch and take pictures with me. And I also say that of course in the evening you can sit together, maybe even have dinner, drink some wine. And this is a different atmosphere than the Internet.
I can’t travel every month to Ukraine, Kyrgyzstan or Armenia, etc. And so regular meetings with parents online are a very good opportunity. It’s free for my parents and for me. Because it is very expensive to talk on the phone with Germany or Austria or Switzerland. And via Skype it is convenient. If you use video it is already a more personal conversation, you see the interlocutor. And I have this experience when we talk to parents via Skype. And if the child is sitting next to his mother, he also looks in the face and communicates. Children are very natural, they are easy to get in touch with.
- What myths prevent parents from deciding on cochlear implantation the most?
Do you mean why parents can say, "No, thank you, I don’t want my child to have a cochlear implant." In Germany, it was a very, very long time ago, 30-35 years ago. There was a similar situation. Operations began in Germany in 1984. The first adult patients appeared who were not helped by hearing aids. For a long time, deaf children and adults did not speak. There were no solutions for them. And when the cochlear implant appeared on the market, and the first operations were performed in Germany, literally everyone, not only parents, but also teachers, doctors, even ENT doctors said: “It can’t help. We have seen for many years that there is no solution. Such a small implant will not help. " And this was the first reason why CI was not trusted - experts were wary and talked about it.
The second reason: there was a lot of incorrect information. For example, that it is stimulation and that the implant is in the head. That its presence changes the function of the child’s brain and the baby may be strange. There were rumors that the child allegedly heard sounds from other planets. This is a myth. You also heard a horror story today about sticking out electrodes. All this is of course not true.
I am afraid that there are ENT doctors in Ukraine as well, probably not in Kyiv, but in other small towns, who may say: “Cochlear implant - what is it? This cannot be. I don’t believe in that. " And they also tell their parents, “You don’t have to have surgery, it’s dangerous. Your child is, in principle, healthy. Why do you need surgery? It is expensive. And then it will be necessary to change the speech processor and other parts. " Of course there are parents who are worried. One family is waiting for surgery in mid-September. And my mom says to me, "I’m worried," and I ask, "Why are you worried?" She is worried about surgery, about anesthesia. That’s right, of course, it’s surgery, it’s anesthesia, but the chance for a child is very high: to be able to hear and develop speech. Become a member of a hearing society.
Monica Lenhardt with Ukrainian parents and specialists after a meeting on September 6, 2017 (Kiev)
- In 1987, in Basel, you opened a branch of Kochlear and headed the office. That is, you managed to form a team of two to 75 people. What traits of your character helped to create a team from scratch? And what did you, as a leader, have to learn in the course of work?
Yes, it’s true. The implant manufacturer is the Australian company Kohlear. They are headquartered in Sydney. They work closely with the University of Melbourne, Australia. And after the first successes, the team decided to open another office in Europe. We discussed all the possibilities and set up an office in Basel (Switzerland). Because there was a very favorable situation regarding taxes. The Australians said, "Okay, open a new office." And we started working together - with the secretary, then I already had 75 people. From 1987 to 1999 I was the executive director.
For me, Mr. Hamann, who headed Schering in Berlin, served as an example. I worked there after graduating from the University of Vienna. I understood how to be a leader for young people. This does not mean that you need to be the boss, it is more important to be genuinely interested in the people who work for you.
And given this fact, I always tried to be a positive example. I worked late in the office. For me, the implant was like a miracle. We had a fantastic product and my staff saw great results. We were delighted and realized that we can change other people’s lives. And of course in the beginning the task was to convince other specialists who still had doubts. We wanted to show them that this is the best solution. I had a great team and everyone was 100% sure that we were doing the right and good job together.
- You have visited 12 countries, and during this time you have talked to many parents. You probably notice which traits of parents help in successful rehabilitation, and which hinder. What are these traits?
We started working in Germany and then entering the markets of France, Austria, Spain and the Scandinavian countries. In countries like Russia, we started promoting implants a little later. There were difficulties, so in Russia we took the first steps only in 1991. And in Ukraine - in 2004, as well as in Armenia. But this is only because financial opportunities in these countries are limited.
You may be surprised, but you don’t need anything special to do with your child. The well-known sign language interpreter Mora Clark from England always tells her parents: “You don’t need anything special. You just have to do more with what you do with children who have normal hearing. ” In practice, when you hear the phone, a normal hearing child after a few months already understands that it is the phone ringing. Our children with implants hear earlier after the operation, but they do not understand what kind of sounds they are. And so it is important to tell the child: “Ivan, have you heard? It was a telephone. That’s what he makes. " You need to repeat 2-3 times a day and pay attention to it. "It’s music. Do you hear Very quiet music. " Parents need to understand that they play the most important role. And not to say that: "I’m walking, and my child is engaged with an expert."
Unfortunately, I have seen this approach in Arab countries, where families are very rich. And mothers say, “Yes, our child has a very big problem. But we have experts and they have to deal with and solve this problem. " And moms go for a walk, go shopping. Of course, this attitude has a negative effect. Because, as we also said today, parents invest 90% of their time in the child, and the expert 1-3 times a week. It is not necessary to take a specialist every day if mom, dad and grandma are engaged and talk to the child.
- I also have a hearing- impaired son. He, however, wears a hearing aid. He is 12 years old. And I also had the feeling that I was a walking parrot. Because I talked to him all the time and voiced everything.
It is important not to talk loudly with implanted children. This has a negative effect. You need to talk with good articulation. And the first time after the operation to give the child the opportunity to look at the lips. It’s good at school if he sits in a place with good acoustics. If the floor is concrete - it’s not good, with a carpet would be better. Because the acoustic situation is very important for such children. But if there is reverberation - this is a gradual decrease in sound with its repeated reflection, such children are very difficult to perceive speech. In Germany, there are professionals who go to school and teach what is necessary for children with hearing impairments to be in a better acoustic environment.
- Monica, you are also a co-founder of the fund. Ernst Lenhardt. Do you cooperate with Ukrainian public organizations?
I try very hard, but not yet. I know only some parents and today there were three women from Kiev. In the summer, they organized a camp for hearing-impaired children. And they asked me if we could cooperate. I said, "Of course, with pleasure." The activists said that they were in Hanover, Germany, and saw a rehabilitation center, and now they want to establish a similar one in Ukraine. I think it would be good to try to get the support of the European Association. Because the connection between Europe and Ukraine is good. And I know that the European Association is interested in such projects. And I hope that if we find such an association here in Ukraine, we will do it together and there is a good chance to get funding.
- Are there any examples in your experience when the issues were initially resolved not at the state level, but thanks to the initiative of parent organizations?
Yes. I especially remembered when there was such a situation in Poland. Poland is a member of Europe, but I remember there were some difficulties. In my opinion, this was a question about replacing the speech processor. They had funding and the parents decided they needed to move the process forward. They united and made such an action: they sent many faxes to all ministries. This is called Rada in Poland. And everyone received faxes, which led to their blocking. Later, the parents found one member of the council, who himself has some serious difficulties, he has a disability. And he began to promote parental initiatives. In the end, they managed to get everything they wanted.
The government and the government can do a lot, but only if they unite with organizations, separate parents do not have a chance. After all, parents give their vote to members of parliament. That is why deputies who work in parliament must make positive projects.
And if the parents of deaf children have time to convince the members of the council, then they have a chance. Of course, this is difficult. Especially in Ukraine, where the situation is quite difficult with regard to corruption and monopolies, but it would be very important for parents to unite.
- I often hear from mothers such an attitude that: "I’m alone, my husband is gone, help." Tell me this is a purely Ukrainian trend? In European countries, when men find out that there are some problems with the child, do they also leave the family?
Unfortunately, not only in Ukraine, we have the same thing.
- And how do women overcome this? Is there adult rehabilitation in Germany?
There is a psychiatrist and psychological support after diagnosis. We have, as we say, early intervention. But early intervention does not mean that the child receives a diagnosis, receives a hearing aid, etc. And in many cases, the whole family receives psychological support. As today Svetlana ( Zaika, deaf pedagogue - author’s note ) well described the 5 stages of parental reaction * .And this is a terrible period, because in the family they start blaming each other, looking for who is to blame. Maybe a grandmother or someone else in the family. And this has a negative effect on the relationship between husband and wife. And, unfortunately, in most cases, when they separate, the mother stays with the child, and the father disappears. Unfortunately, we have the same. But we have psychological support for families. And I think it really helps. And the father understands that he has the same important role as the mother.
- Were there any scientific experiments in schools in Germany? When, for example, you took a separate class or school, conducted a learning experiment and recorded a method of what works, what doesn’t, and then scaled it up.
Of course, yes. We needed evidence to persuade insurance companies to pay for the operation. Insurers want to know what results we get. Because it’s quite expensive. As you have seen, 100,000 euros for two implants and speech processors. And now we have a system of research, for example, clinics do it and we get results. Different topics are covered: for example, what problems may arise after the operation from a medical point of view or during the operation, or what are the difficulties with the implant, technical issues after implantation. And all this is documented, it is not the opinion of experts, but the study of problems.
And all our clinics have such documentation: how many patients, what medical results, what complete set gives the best result. And our rehabilitation centers have history of rehabilitation. This means that the child begins rehabilitation sessions and we document that the child does not know anything. And in a few months the first sounds appear, then the words. We have special documentation.
- As far as I know, there is no such thing in Ukraine, the centers work differently.
But you have a few clinics. The most important and almost the only state clinic is the Kolomyichenko ENT Institute in Kyiv. They have some results, but perhaps such documentation is not conducted as carefully as we have in Western Europe. It is surprising why there is such a long list of children waiting in line for surgery. Of course, the situation in Ukraine is very complicated. We can say that in some parts of the country there is a war and, unfortunately, the state gives more money for other things than for implants. And the state does not give anything for rehabilitation. And parents have to pay for rehabilitation themselves.
Of course, we all want children with cochlear implants to go to regular schools, but without support this is also impossible. Teachers in mainstream schools do not know how to work with them and they are just surprised. When teachers see a child with this strange device, they do not understand what the child hears and how to deal with it. In Germany, the rehabilitation system works like this: special teachers go to mainstream schools and tell teachers how to understand such children. And give recommendations on acoustic issues. Pay attention to sound absorption: the presence of carpet, curtains, etc. Inclusive education is a goal, but it will not happen without state support.
- You often move, do you have any habits that you do even on the plane? What are you doing to recover?
I’ve flown about 40 times around the world, but I’m happy to be able to sleep on a plane. And my husband Michael is surprised and says, "You can sleep better on a plane than at home." First, I am 73 years old and I work a lot. And when I’m on a plane, I tell him I’m tired. I catch the moment that it is quiet now, no phone, no skype and I can sleep. And usually I drink a glass of wine and then sleep.
- Is it easy to please you?
Yes. I was born in Vienna and I love music very, very much. I attend various concerts. The Vienna Symphony Orchestra is one of the best in the world. And my husband and I have a season ticket, we can be regular listeners. At home I also listen to music, especially classical. And I also love to read, I read very often. And I have a beautiful beagle dog Slunichko. Unfortunately, I have no children. But all my activities are related to helping children. And I am happy that my husband has three children and already has three granddaughters. And that’s good.
Author Oksana Gunko. InfoHearing
* Five stages of parental reaction to a child’s diagnosis: 1 - shock (parents refuse to believe what happened to their child), 2 - understanding (parents are trying to realize a new reality, 3- protective objection (parents begin to argue with specialists, disagree with the proposed rehabilitation options, look for a better specialist, bypass various centers and clinics), 4 - acceptance (during this period, parents understand that you need to practice a specific method and move to stage 5 - constructive action: when they understand what specialists their child needs, form a team of speech therapist, deaf educator, psychologist and start
- Many parents tried to break through to you today to communicate in person. And also - specialists and initiators of public projects. Do other countries also want personal communication or a similar reaction only in Ukraine?
Yes, in many countries the same - in Armenia and Kyrgyzstan. The audience is very happy when I come. Because you can touch and take pictures with me. And I also say that of course in the evening you can sit together, maybe even have dinner, drink some wine. And this is a different atmosphere than the Internet.
I can’t travel every month to Ukraine, Kyrgyzstan or Armenia, etc. And so regular meetings with parents online are a very good opportunity. It’s free for my parents and for me. Because it is very expensive to talk on the phone with Germany or Austria or Switzerland. And via Skype it is convenient. If you use video it is already a more personal conversation, you see the interlocutor. And I have this experience when we talk to parents via Skype. And if the child is sitting next to his mother, he also looks in the face and communicates. Children are very natural, they are easy to get in touch with.
- What myths prevent parents from deciding on cochlear implantation the most?
Do you mean why parents can say, "No, thank you, I don’t want my child to have a cochlear implant." In Germany, it was a very, very long time ago, 30-35 years ago. There was a similar situation. Operations began in Germany in 1984. The first adult patients appeared who were not helped by hearing aids. For a long time, deaf children and adults did not speak. There were no solutions for them. And when the cochlear implant appeared on the market, and the first operations were performed in Germany, literally everyone, not only parents, but also teachers, doctors, even ENT doctors said: “It can’t help. We have seen for many years that there is no solution. Such a small implant will not help. " And this was the first reason why CI was not trusted - experts were wary and talked about it.
The second reason: there was a lot of incorrect information. For example, that it is stimulation and that the implant is in the head. That its presence changes the function of the child’s brain and the baby may be strange. There were rumors that the child allegedly heard sounds from other planets. This is a myth. You also heard a horror story today about sticking out electrodes. All this is of course not true.
I am afraid that there are ENT doctors in Ukraine as well, probably not in Kyiv, but in other small towns, who may say: “Cochlear implant - what is it? This cannot be. I don’t believe in that. " And they also tell their parents, “You don’t have to have surgery, it’s dangerous. Your child is, in principle, healthy. Why do you need surgery? It is expensive. And then it will be necessary to change the speech processor and other parts. " Of course there are parents who are worried. One family is waiting for surgery in mid-September. And my mom says to me, "I’m worried," and I ask, "Why are you worried?" She is worried about surgery, about anesthesia. That’s right, of course, it’s surgery, it’s anesthesia, but the chance for a child is very high: to be able to hear and develop speech. Become a member of a hearing society.
Monica Lenhardt with Ukrainian parents and specialists after a meeting on September 6, 2017 (Kiev)
- In 1987, in Basel, you opened a branch of Kochlear and headed the office. That is, you managed to form a team of two to 75 people. What traits of your character helped to create a team from scratch? And what did you, as a leader, have to learn in the course of work?
Yes, it’s true. The implant manufacturer is the Australian company Kohlear. They are headquartered in Sydney. They work closely with the University of Melbourne, Australia. And after the first successes, the team decided to open another office in Europe. We discussed all the possibilities and set up an office in Basel (Switzerland). Because there was a very favorable situation regarding taxes. The Australians said, "Okay, open a new office." And we started working together - with the secretary, then I already had 75 people. From 1987 to 1999 I was the executive director.
For me, Mr. Hamann, who headed Schering in Berlin, served as an example. I worked there after graduating from the University of Vienna. I understood how to be a leader for young people. This does not mean that you need to be the boss, it is more important to be genuinely interested in the people who work for you.
And given this fact, I always tried to be a positive example. I worked late in the office. For me, the implant was like a miracle. We had a fantastic product and my staff saw great results. We were delighted and realized that we can change other people’s lives. And of course in the beginning the task was to convince other specialists who still had doubts. We wanted to show them that this is the best solution. I had a great team and everyone was 100% sure that we were doing the right and good job together.
- You have visited 12 countries, and during this time you have talked to many parents. You probably notice which traits of parents help in successful rehabilitation, and which hinder. What are these traits?
We started working in Germany and then entering the markets of France, Austria, Spain and the Scandinavian countries. In countries like Russia, we started promoting implants a little later. There were difficulties, so in Russia we took the first steps only in 1991. And in Ukraine - in 2004, as well as in Armenia. But this is only because financial opportunities in these countries are limited.
You may be surprised, but you don’t need anything special to do with your child. The well-known sign language interpreter Mora Clark from England always tells her parents: “You don’t need anything special. You just have to do more with what you do with children who have normal hearing. ” In practice, when you hear the phone, a normal hearing child after a few months already understands that it is the phone ringing. Our children with implants hear earlier after the operation, but they do not understand what kind of sounds they are. And so it is important to tell the child: “Ivan, have you heard? It was a telephone. That’s what he makes. " You need to repeat 2-3 times a day and pay attention to it. "It’s music. Do you hear Very quiet music. " Parents need to understand that they play the most important role. And not to say that: "I’m walking, and my child is engaged with an expert."
Unfortunately, I have seen this approach in Arab countries, where families are very rich. And mothers say, “Yes, our child has a very big problem. But we have experts and they have to deal with and solve this problem. " And moms go for a walk, go shopping. Of course, this attitude has a negative effect. Because, as we also said today, parents invest 90% of their time in the child, and the expert 1-3 times a week. It is not necessary to take a specialist every day if mom, dad and grandma are engaged and talk to the child.
- I also have a hearing- impaired son. He, however, wears a hearing aid. He is 12 years old. And I also had the feeling that I was a walking parrot. Because I talked to him all the time and voiced everything.
It is important not to talk loudly with implanted children. This has a negative effect. You need to talk with good articulation. And the first time after the operation to give the child the opportunity to look at the lips. It’s good at school if he sits in a place with good acoustics. If the floor is concrete - it’s not good, with a carpet would be better. Because the acoustic situation is very important for such children. But if there is reverberation - this is a gradual decrease in sound with its repeated reflection, such children are very difficult to perceive speech. In Germany, there are professionals who go to school and teach what is necessary for children with hearing impairments to be in a better acoustic environment.
- Monica, you are also a co-founder of the fund. Ernst Lenhardt. Do you cooperate with Ukrainian public organizations?
I try very hard, but not yet. I know only some parents and today there were three women from Kiev. In the summer, they organized a camp for hearing-impaired children. And they asked me if we could cooperate. I said, "Of course, with pleasure." The activists said that they were in Hanover, Germany, and saw a rehabilitation center, and now they want to establish a similar one in Ukraine. I think it would be good to try to get the support of the European Association. Because the connection between Europe and Ukraine is good. And I know that the European Association is interested in such projects. And I hope that if we find such an association here in Ukraine, we will do it together and there is a good chance to get funding.
- Are there any examples in your experience when the issues were initially resolved not at the state level, but thanks to the initiative of parent organizations?
Yes. I especially remembered when there was such a situation in Poland. Poland is a member of Europe, but I remember there were some difficulties. In my opinion, this was a question about replacing the speech processor. They had funding and the parents decided they needed to move the process forward. They united and made such an action: they sent many faxes to all ministries. This is called Rada in Poland. And everyone received faxes, which led to their blocking. Later, the parents found one member of the council, who himself has some serious difficulties, he has a disability. And he began to promote parental initiatives. In the end, they managed to get everything they wanted.
The government and the government can do a lot, but only if they unite with organizations, separate parents do not have a chance. After all, parents give their vote to members of parliament. That is why deputies who work in parliament must make positive projects.
And if the parents of deaf children have time to convince the members of the council, then they have a chance. Of course, this is difficult. Especially in Ukraine, where the situation is quite difficult with regard to corruption and monopolies, but it would be very important for parents to unite.
- I often hear from mothers such an attitude that: "I’m alone, my husband is gone, help." Tell me this is a purely Ukrainian trend? In European countries, when men find out that there are some problems with the child, do they also leave the family?
Unfortunately, not only in Ukraine, we have the same thing.
- And how do women overcome this? Is there adult rehabilitation in Germany?
There is a psychiatrist and psychological support after diagnosis. We have, as we say, early intervention. But early intervention does not mean that the child receives a diagnosis, receives a hearing aid, etc. And in many cases, the whole family receives psychological support. As today Svetlana ( Zaika, deaf pedagogue - author’s note ) well described the 5 stages of parental reaction * .And this is a terrible period, because in the family they start blaming each other, looking for who is to blame. Maybe a grandmother or someone else in the family. And this has a negative effect on the relationship between husband and wife. And, unfortunately, in most cases, when they separate, the mother stays with the child, and the father disappears. Unfortunately, we have the same. But we have psychological support for families. And I think it really helps. And the father understands that he has the same important role as the mother.
- Were there any scientific experiments in schools in Germany? When, for example, you took a separate class or school, conducted a learning experiment and recorded a method of what works, what doesn’t, and then scaled it up.
Of course, yes. We needed evidence to persuade insurance companies to pay for the operation. Insurers want to know what results we get. Because it’s quite expensive. As you have seen, 100,000 euros for two implants and speech processors. And now we have a system of research, for example, clinics do it and we get results. Different topics are covered: for example, what problems may arise after the operation from a medical point of view or during the operation, or what are the difficulties with the implant, technical issues after implantation. And all this is documented, it is not the opinion of experts, but the study of problems.
And all our clinics have such documentation: how many patients, what medical results, what complete set gives the best result. And our rehabilitation centers have history of rehabilitation. This means that the child begins rehabilitation sessions and we document that the child does not know anything. And in a few months the first sounds appear, then the words. We have special documentation.
- As far as I know, there is no such thing in Ukraine, the centers work differently.
But you have a few clinics. The most important and almost the only state clinic is the Kolomyichenko ENT Institute in Kyiv. They have some results, but perhaps such documentation is not conducted as carefully as we have in Western Europe. It is surprising why there is such a long list of children waiting in line for surgery. Of course, the situation in Ukraine is very complicated. We can say that in some parts of the country there is a war and, unfortunately, the state gives more money for other things than for implants. And the state does not give anything for rehabilitation. And parents have to pay for rehabilitation themselves.
Of course, we all want children with cochlear implants to go to regular schools, but without support this is also impossible. Teachers in mainstream schools do not know how to work with them and they are just surprised. When teachers see a child with this strange device, they do not understand what the child hears and how to deal with it. In Germany, the rehabilitation system works like this: special teachers go to mainstream schools and tell teachers how to understand such children. And give recommendations on acoustic issues. Pay attention to sound absorption: the presence of carpet, curtains, etc. Inclusive education is a goal, but it will not happen without state support.
- You often move, do you have any habits that you do even on the plane? What are you doing to recover?
I’ve flown about 40 times around the world, but I’m happy to be able to sleep on a plane. And my husband Michael is surprised and says, "You can sleep better on a plane than at home." First, I am 73 years old and I work a lot. And when I’m on a plane, I tell him I’m tired. I catch the moment that it is quiet now, no phone, no skype and I can sleep. And usually I drink a glass of wine and then sleep.
- Is it easy to please you?
Yes. I was born in Vienna and I love music very, very much. I attend various concerts. The Vienna Symphony Orchestra is one of the best in the world. And my husband and I have a season ticket, we can be regular listeners. At home I also listen to music, especially classical. And I also love to read, I read very often. And I have a beautiful beagle dog Slunichko. Unfortunately, I have no children. But all my activities are related to helping children. And I am happy that my husband has three children and already has three granddaughters. And that’s good.
Author Oksana Gunko. InfoHearing
* Five stages of parental reaction to a child’s diagnosis: 1 - shock (parents refuse to believe what happened to their child), 2 - understanding (parents are trying to realize a new reality, 3- protective objection (parents begin to argue with specialists, disagree with the proposed rehabilitation options, look for a better specialist, bypass various centers and clinics), 4 - acceptance (during this period, parents understand that you need to practice a specific method and move to stage 5 - constructive action: when they understand what specialists their child needs, form a team of speech therapist, deaf educator, psychologist and start