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

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!


Francisco de Goya y

Lucientes, Ydioma universal

(Sueño I), 1797,

Federzeichnung mit

Bleistift, Museo del Prado,

Madrid

...history...


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


The 1980s...a new era began


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.



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...


‣ 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


Our goal must be consistency –

from diagnosis to social integration


CI care – one of the most

complex processes


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


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



#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.


‣ 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?


‣ 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 ?


‣ 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?


‣ 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?


‣ 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?


‣ „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

http://www.lehnhardt-stiftung.org



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 money

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 excellence

BUT: Therapists suffer from smaller income and

lower budgets for traveling and are consequently

less present in traditional networks

How can we support?


Finance. Knowledge.

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!

‣ PORA! unites best technologies to one

easy-to-use web platform

‣ 488.000 results for „cochlear implant“



‣ 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



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 questions

http://www.hicen.eu

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.


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.

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 example

Where do we go from here?

The Outlook.


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


Now it„s your turn!

Thank you!

http://www.monika-lehnhardt.net/



http://www.lehnhardt-akademie.net/poraseminar09







Health & Medicine

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