methodologies and organization of rehabilitation-eng 2010-04-08
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Methodologies
and Organization
of Rehabilitation
Varese – April 8th - 10th, 2010
Dr. Dr. h.c. Monika Lehnhardt
Chairwoman of Prof. Ernst Lehnhardt-Foundation
for CI recipients in Europe
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
Allow me a short trip
into the history of deafness...
„Hearing has the
most significant contribution
to intelligence and knowledge“
Aristoteles
...history...
„Ex auditu fidem“
(belief is based on hearing)
Paulus
Deaf people are an
„object for visual perception“
Leonardo da Vinci
‣ Long periods of
‣ Discrimination
‣ Social exclusion
‣ Prosecution
‣ „Born to be deaf“
‣ Untreatable!
www.lehnhardt-stiftung.org
Francisco de Goya y
Lucientes, Ydioma universal
(Sueño I), 1797,
Federzeichnung mit
Bleistift, Museo del Prado,
Madrid
...history...
www.lehnhardt-stiftung.org
Francisco de Goya y Lucientes,
Taubstummenalphabet, 1812,
Federzeichnung, Instituto
de Valencia de Don Juan, Madrid
Deafness until the 1970s...
Deafness no longer an
irrevocable 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 hearing
www.lehnhardt-stiftung.org
The 1980s...a new era began
www.lehnhardt-stiftung.org
Deafness - the most frequent
impairment 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
www.lehnhardt-stiftung.org
Deafness today - a global
market...
‣ Since the 1980s approx 170,000 implantations
‣ Average investment per CI patient:
30 - 40k € unilateral, 70 - 80k € bilateral
...with increasing demands
to politicians and infrastructure...
www.lehnhardt-stiftung.org
‣ Constitution of a
network of centers of
competence for surgical
intervention, fitting and
rehabilitation
‣ Compulsory newborn
screening and
tracking
‣ Stepping into remote
technologies for fitting,
adjustment and system
control as well as for
parents counseling and
rehabilitation
‣ Financing of CI
programs by public
health systems and by
health insurances
...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 processes
www.lehnhardt-stiftung.org
Our goal must be consistency –
from diagnosis to social integration
www.lehnhardt-stiftung.org
CI care – one of the most
complex processes
www.lehnhardt-stiftung.org
Programs and workflows for screening defined and implemented
Tracking installed
Suspicion raised and substantiated
Diagnosis made
Positive change of parent‘s behavior towards child
Early intervention (e.g. hearing aids)
Surgery
Fitting
Rehabilitation
Therapy
Continuous care (psychological, technological)
Social integration (into community)
Neonatal Hearing Screening
Early Childhood Hearing Screening
Parents need guidance –
processes need management
www.lehnhardt-stiftung.org
Surgeon is responsible from
„A to Z“ within the CI clinic
ENT/Audiologist performs outpatient diagnosis
and refers child to CI clinic
Surgeon is responsible for operation only,
and refers recipient to the to CI center
Cooperation between Audiologist, Surgeon,
Engineer, Speech Therapist, TOD
1
2
3
4
Ways to manage a CI program:
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 programs
www.lehnhardt-stiftung.org
www.lehnhardt-stiftung.org
#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
‣ 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... Belgrade
#2: Is the surgeon globally responsible
for the CI recipient or only for the surgery?
#3: Is each professional responsible for his
own activity only or is there one key person?
www.lehnhardt-stiftung.org
‣ 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
implemented
#4: Is the rehabilitation a health care
activity or an education activity ?
www.lehnhardt-stiftung.org
‣ 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 Education
#5: What is the educational background /
degree of the specialist in rehabilitation?
www.lehnhardt-stiftung.org
‣ 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 female
#6: Who is responsible for rehabilitation: Hearing specialists or experts in communication?
www.lehnhardt-stiftung.org
‣ 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 doctors
#7: Are there centers dedicated exclusively
to deaf care in your country?
www.lehnhardt-stiftung.org
‣ „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 exception
Summary
www.lehnhardt-stiftung.org
‣ 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 money
Conclusion
www.lehnhardt-stiftung.org
‣ The biggest winners since first implantations
are children
‣ Also industry and surgeons benefit from growth
‣ Rehabilitation centers in specific countries
reached a level of excellence
BUT: Therapists suffer from smaller income and
lower budgets for traveling and are consequently
less present in traditional networks
How can we support?
www.lehnhardt-stiftung.org
Finance. Knowledge.
Health 2.0 - the PORA! project
www.lehnhardt-stiftung.org
‣ 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!
‣ PORA! unites best technologies to one
easy-to-use web platform
‣ 488.000 results for „cochlear implant“
Health 2.0 - the PORA! project
www.lehnhardt-stiftung.org
‣ Free conference calls across the
globe
‣ Web conferencing - live and pre-
recorded content from computer to
computer(s)
‣ Excellent scientific material – written
for parents and therapists
‣ Blogging - publish articles, leave
comments and ask questions
Health 2.0 - the PORA! project
www.lehnhardt-stiftung.org
PORA! - The Content
www.lehnhardt-stiftung.org
‣ 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 questions
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
PORA! - The Motivation
www.lehnhardt-stiftung.org
‣ 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.
PORA! - The Future
www.lehnhardt-stiftung.org
‣ 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 example
Where do we go from here?
The Outlook.
www.lehnhardt-stiftung.org
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
www.lehnhardt-stiftung.org
Now it„s your turn!
Thank you!
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