Transcript cochlear implants in cyprus

COCHLEAR IMPLANTS IN
CYPRUS
OUR EXPERIENCE SO FAR!
Cyprus, March 2009
SOME BACKGROUND INFO
Cyprus is a small island with a small population. An
important aspect of Cypriot society is the need of the
individual to blend into the majority. This has always
made the adjustment of parents to a child’s disability
difficult, and in the area of the hearing impaired, has
made acceptance of hearing loss, hearing aids and sign
language, never easy, even more difficult than in some
other societies. The reverse side of this coin is the
indiscriminate adoption of something new by individual
members of a group when the group as a whole has
accepted the innovation. We can see this in the
wholesale implanting of children in Cyprus.
Statistics
 There are about 85 individuals with cochlear
implants in Cyprus now, 22 adults and about 63
children (0 – 18).
 In the period 1999 – 2002, children were being
implanted between 2 to 3 ½ years of age.
 In the period 2002 – 2007, this changed to from 1 to
2 ½ years of age.
 More recently, children have been implanted from 9
months to 1 ½ years of age.
Statistics, continued
 All of these implants were in one ear only.
 Three implanted adults chose not to continue using
the device and two children with particular
syndromes were not able to fully benefit from the
device.
 The Ministry of Health pays for the surgery and the
device. Service and maintenance is done by the
distributors (the users pay). Programming of the
device is through government services.
Reactions of various groups
PARENTS
Parents initially have difficulty accepting the diagnosis
of hearing impairment and also reject the cochlear
implant at first because of its size and visibility.
They are usually convinced after seeing other
children with the implants.
 Some parents then believe that the implant
“takes care of” the problem and do not realize
the need for special education/support services
and their own involvement in these.
 Parents need to talk with other parents of
implanted children before implantation to have
more realistic expectations.
THE DEAF
 The Deaf community in Cyprus had adopted the
earlier position of many Deaf communities
worldwide as being opposed to cochlear implants.
 The relevant hearing community (the Ministries of
Health and of Education, educators of the hearing
impaired, and hearing parents of hearing impaired
children, as an organisation) has not systematically
provided accessible information about cochlear
implants to the Deaf community, whether through
ignorance of the need or indifference to it.
 Because of lack of access to largely written in
other languages (not Greek) material, the Cypriot
Deaf community has lacked updated information,
both on the implant itself and on other Deaf
communities’ revised positions.
 The Cyprus Federation of the Deaf’s current
position is that the cochlear implant is an
individual decision, the implanted individual
remains a hearing impaired individual, and is
accepted as a member of the community, if he so
desires.
Teachers, Speech therapists and other
professionals
Teachers report generally improved progress in
speech and language development. We often hear
that a profoundly deaf child is “functioning like a
hard-of-hearing child.”
Teachers need to be better informed about the
capabilities of the device, and its everyday care and
troubleshooting. They need continual updating
about new developments.
At the School for the Deaf
At the School for the Deaf, we use a
combination of communication modes
and find that one mode need not
exclude another. In fact, one mode
often supports the other and the
children make better progress.
Children at the School are exposed
to all modes of communication and are
allowed and encouraged to express
themselves in the mode they prefer.
Progress and problems
 Children with cochlear implants tend to develop speech
sooner than profoundly deaf children with BTEs. This is
a “two-edged sword.” On the one hand, it is very
encouraging for parents (and teachers) to hear their child
speak. On the other hand, it may give them the
impression that the child is progressing better than he
actually is, and may cause them to neglect the very
important work of language development.
 Children with implants may not be assisted and
encouraged to develop alternate/parallel means of
communication (speechreading, signing, listening with
the non-implanted ear) and when the device is removed,
they are unable to communicate effectively.
 Parents of children, or adult candidates themselves,
need better evaluation procedures and more
information, including contact with other implant
users, before proceeding with implantation. Too
often, a decision to implant is based on wishful
thinking and unrealistic understandings and
expectations.
 We need objective evaluation of the children’s
progress (this is true for non-implanted children,
as well). This is difficult to achieve, of course,
because there are so many variables (age of
implantation, speech and language development
at age of implantation, support provided, etc.) but
there should at least be a way to measure if a
year’s worth of progress is being made in a year’s
time.
 With children who are already in a particular
educational program and are then implanted, what
changes do we make? How do we move, if necessary,
from one mode of communication (visual) to another
mode (auditory)? Or, with children who are
implanted before entering a program, do we
emphasize one mode (auditory) at the expense or
exclusion of another (visual)?
What’s next?
 We need more objective and complete evaluation of
the child before implantation.
 Parents need more information before implantation.
 Teachers and other professionals need more
information.
 We need objective evaluation of the child’s progress
post implantation.
P.S. What about the longterm health risks?
 In Cyprus it is always difficult, in any area, to do research
that will have validity, due to our small population. This
applies to research in the area of deafness virtually
worldwide, because it is a low incidence “handicap.” And
in the area of implants, the numbers are even smaller.
Therefore, in order to investigate the possibility of
longterm ill effects (tumors, tinnitus, etc.) we need a
worldwide database, or at the very least, the numbers for
Europe. Perhaps we need to work with the relevant body
in Europe or the WHO. We cannot expect that the
manufacturers of the device are going to responsibly
investigate this.