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Methodologies and organization of rehabilitation-eng 2010-04-08

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  • 1. Methodologies and Organization of Rehabilitation for CI recipients in EuropeVarese – April 8th - 10th, 2010Dr. Dr. h.c. Monika LehnhardtChairwoman of Prof. Ernst Lehnhardt-Foundation
  • 2. My objectives for today: ‣ Remind you of the history of deafness ‣ Give an overview about the status quo of CI care for children in Europe ‣ Familiarize you with the Foundation„s initiative „Schenken Sie Kindern Gehör“ „Lend Children an Ear“www.lehnhardt-stiftung.org
  • 3. Allow me a short tripinto the history of deafness... „Hearing has the most significant contribution to intelligence and knowledge“ Aristoteles
  • 4. ...history... „Ex auditu fidem“ (belief is based on hearing) Paulus Deaf people are an „object for visual perception“ Leonardo da Vinci
  • 5. ...history... Francisco de Goya y ‣ Long periods of Lucientes, Ydioma universal (Sueño I), 1797, Federzeichnung mit Bleistift, Museo del Prado, Madrid ‣ Discrimination ‣ Social exclusion ‣ Prosecution ‣ „Born to be deaf“ ‣ Untreatable!www.lehnhardt-stiftung.org
  • 6. Deafness until the 1970s... Francisco de Goya y Lucientes, Taubstummenalphabet, 1812, Federzeichnung, Instituto de Valencia de Don Juan, Madridwww.lehnhardt-stiftung.org
  • 7. Deafness no longer anirrevocable blow of fate... ...but a neurodevelopmental emergency ‣ Congenital and acquired deafness is deemed to be treatable ‣ Rapid technological development: smaller, more reliable and more powerful implants – maybe soon fully implantable ‣ Improved surgical techniques with very high success rates and preservation of residual hearingwww.lehnhardt-stiftung.org
  • 8. The 1980s...a new era beganwww.lehnhardt-stiftung.org
  • 9. Deafness - the most frequentimpairment at birth... ‣ 1 out of 1,000 newborn is deaf ‣ On the European continent: 7,000 p.a. ‣ Within the European Union: 5,000 p.a.www.lehnhardt-stiftung.org
  • 10. Deafness today - a globalmarket... ‣ Since the 1980s approx 170,000 implantations ‣ Average investment per CI patient: 30 - 40k € unilateral, 70 - 80k € bilateralwww.lehnhardt-stiftung.org
  • 11. ...with increasing demands to politicians and infrastructure...‣ Constitution of a network of centers of competence for surgical intervention, fitting and rehabilitation ‣ Stepping into remote technologies for fitting, adjustment and system ‣ Financing of CI control as well as for programs by public parents counseling and health systems and by rehabilitation health insurances ‣ Compulsory newborn screening and tracking www.lehnhardt-stiftung.org
  • 12. ...and a BIG challenge: ‣ „Learn to listen“ – for children this is ‣ more than just a surgical intervention ‣ more than rehabilitation ‣ more than just benefit from technology ‣ „Learn to listen“ is one of the most ambitious, most complex, most interdisciplinary long-term treatment processeswww.lehnhardt-stiftung.org
  • 13. Our goal must be consistency –from diagnosis to social integrationwww.lehnhardt-stiftung.org
  • 14. CI care – one of the mostcomplex processes Programs and workflows for screening defined and implemented Tracking installed Suspicion raised and substantiated Neonatal Hearing Screening Diagnosis made Positive change of parent‘s behavior towards child Early Childhood Hearing Screening Early intervention (e.g. hearing aids) Surgery Fitting Rehabilitation Therapy Continuous care (psychological, technological) Social integration (into community)www.lehnhardt-stiftung.org
  • 15. Parents need guidance –processes need management Ways to manage a CI program: Surgeon is responsible from 1 „A to Z“ within the CI clinic ENT/Audiologist performs outpatient diagnosis 2 and refers child to CI clinic Surgeon is responsible for operation only, 3 and refers recipient to the to CI center Cooperation between Audiologist, Surgeon, 4 Engineer, Speech Therapist, TODwww.lehnhardt-stiftung.org
  • 16. Cochlear Implants and Europe –a perfect match? ‣ Europe = 46 countries ‣ CI in Europe = 46 different ways? ‣ No European Union, if structured as heterogeneous as CI programswww.lehnhardt-stiftung.org
  • 17. #1: Where does rehabilitation happen:In the hospitals or outside? ‣ Post-operative care (comprising fitting, counselling and therapy) happens ‣ in health care facilities ‣ educational facilities ‣ and in special Cochlear Implant Rehabilitation Centers ‣ Some are well organized, in some it is entirely up to the initiative of the hospital or private people.www.lehnhardt-stiftung.org
  • 18. #2: Is the surgeon globally responsiblefor the CI recipient or only for the surgery? ‣ Almost everybody agrees that the surgeon should take the overall responsibility ‣ Unfortunately by far not all surgeons share this view ‣ In Switzerland the surgeon is not really responsible for rehabilitation but I know at least one or two who are very interested in the progress of their little patients ‣ In Central- and Eastern Europe most surgeons are not involved in the rehabilitation process Exceptions: Estonia, Lithuania, Poland and... Belgradewww.lehnhardt-stiftung.org
  • 19. #3: Is each professional responsible for hisown activity only or is there one key person? ‣ Obviously every professional - medical doctor, audiologist, therapist and psychologist - is responsible for her / his work ‣ In the ideal case the head of the implanting clinic takes overall responsibility ‣ If this is not the case, it can be a coordinator who ensures that an interdisciplinary approach is implementedwww.lehnhardt-stiftung.org
  • 20. #4: Is the rehabilitation a health careactivity or an education activity ? ‣ In most countries it is regarded as a health care activity and this is reflected by the fact that it is paid for by the health insurance companies and Ministries of Health ‣ I personally believe that rehabilitation of paediatric CI recipients and – often more importantly so – counselling of parents is an educational activity, regardless of where it happens ‣ The reason to “position” rehabilitation as a health care activity may be politically plausible, as the Ministries of Health dispose of significantly more funds than the Ministry of Educationwww.lehnhardt-stiftung.org
  • 21. #5: What is the educational background /degree of the specialist in rehabilitation? ‣ There is a broad variety: Pedagogues for hearing impaired, logopeds, audio therapists, psychologists, ergo therapists, teachers, social pedagogues, music therapists, paedaudiologists etc ‣ There is no legal requirement for a special degree ‣ Most of the professionals working with CI recipients have a degree from college, academy or University ‣ In Eastern Europe, we find mainly speech therapists and teachers for the deaf (surdopedagogues) ‣ 90% of all therapists in Europe are femalewww.lehnhardt-stiftung.org
  • 22. #6: Who is responsible for rehabilitation:Hearing specialists or experts in communication? ‣ Pedagogues who have the competence of sign language are working in the rehabilitation for deaf people ‣ For CI recipients it is in all countries specialists for hearing - but not necessarily medical doctorswww.lehnhardt-stiftung.org
  • 23. #7: Are there centers dedicated exclusivelyto deaf care in your country? ‣ „Schools for the deaf“ existed in many countries - those schools have been and are going to be closed in Western countries as nearly all deaf born children are privileged to receive a cochlear implant and increasingly even bilateral cochlear implants ‣ Today„s institutions: Special Rehabilitation Centers for CI recipients, special institutions for early support and intervention (Frühförderung), special boarding schools and vocational training establishments ‣ In Central and Eastern Europe special CI rehabilitation centers are still the exceptionwww.lehnhardt-stiftung.org
  • 24. Summary‣ A „gold standard“ is defined, but it is optional‣ The level of implementation varies greatly from country to country and even region to region‣ Key opinion leaders make it happen!‣ Black sheep with insufficient expertise are still making moneywww.lehnhardt-stiftung.org
  • 25. Conclusion‣ The biggest winners since first implantations are children‣ Also industry and surgeons benefit from growth‣ Rehabilitation centers in specific countries reached a level of excellenceBUT: Therapists suffer from smaller income andlower budgets for traveling and are consequentlyless present in traditional networkswww.lehnhardt-stiftung.org
  • 26. How can we support?Finance. Knowledge.www.lehnhardt-stiftung.org
  • 27. Health 2.0 - the PORA! project‣ PORA! is Russian and means: It‘s high time!‣ Why? Because Web 2.0 – Community Internet helps connecting people, saving time and money and increasing motivation and knowledge‣ But: Quality content is needed! ‣ 488.000 results for „cochlear implant“‣ PORA! unites best technologies to one easy-to-use web platformwww.lehnhardt-stiftung.org
  • 28. Health 2.0 - the PORA! project ‣ Free conference calls across the globe ‣ Web conferencing - live and pre- recorded content from computer to computer(s) ‣ Blogging - publish articles, leave comments and ask questions ‣ Excellent scientific material – written for parents and therapistswww.lehnhardt-stiftung.org
  • 29. Health 2.0 - the PORA! projectwww.lehnhardt-stiftung.org
  • 30. PORA! - The Content ‣ Contains translation of the learning material of the HICEN project (www.hicen.eu) into Russian - making it accessible on the Internet for free ‣ Topic: „Hearing Impaired Children“ – Elementary needs in preschool care and education ‣ Initiated by the Pädagogische Hochschule Heidelberg and the Lehnhardt Academy in 2006, consisting of 9 modules, written by internationally recognized authors, available in English, German, Spanish and soon in Portuguese ‣ Publication of recorded audio Power Point Presentations (in writing bilingual) of selected modules and other multi-media learning content - Participants of the PORA! seminar can listen to these at any time and write ‣ Platform for comments and questionswww.lehnhardt-stiftung.org
  • 31. PORA! - The Aims ‣ Knowledge Exchange and Transfer ‣ Applying new methods like using web based social media for Russian speaking therapists, teachers, other professionals and parents dealing with very young children who are severely hearing impaired or deaf wearing hearing aids and /or Cochlear Implants. ‣ Initialize and encourage networked learning and exchange of experience amongst Russian speaking professionals and parents. ‣ Networked learning means making use of web based social media and social networks.www.lehnhardt-stiftung.org
  • 32. PORA! - The Motivation ‣ Eliminate problems related to remote locations Parents and professionals do not have to travel long distances, spending much more time traveling than in the therapy session or meeting with other parents ‣ Overcome financial restriction Communication via Internet, Skype and in LiveOnline Rooms is very low cost if not for free ‣ Enjoy the social impact People who use the modern ways of web based communication change their way of behavior, become more active and self-confident and this will reflect positively on their interaction with their child.www.lehnhardt-stiftung.org
  • 33. PORA! - The Future ‣ Offer PORA! to a bigger audience ‣ Adapt the project for English / Spanish / Rumanian speaking therapists and parents ‣ Continuous quality improvement of the learning content and mode of presentation / communication based on learning by examplewww.lehnhardt-stiftung.org
  • 34. Where do we go from here?The Outlook.www.lehnhardt-stiftung.org
  • 35. Now it„s your turn! Download and look up my presentation at www.monika-lehnhardt.net and write a comment Register for one of the next presentations at www.lehnhardt-akademie.net/poraseminar09 Do you have any ideas about methodologies, organization, remote care? Please share them with us at www.monika-lehnhardt.net Thank you!www.lehnhardt-stiftung.org