From: Arlette.Lefebvre@f24.n3602.z1.fidonet.org (Arlette Lefebvre)
Newsgroups: misc.handicap
Subject: Knowing where to look
Date: 31 Aug 92 12:25:50 GMT
Reply-To: Arlette.Lefebvre@f24.n3602.z1.fidonet.org
Organization: FidoNet node 1:3602/24 - ADAnet One (tm) Net, Pinson AL

Index Number: 24065

Bonsoir, my friends!

I have just finished the first draft of a paper for the new Ability
Network magazine, this afternoon, and would really appreciate
everybody's feedback about it...particularly on whether or not it
is way too simplistic or too general and hypothetical to be of
interest to the disabled consumers and health service providers of
this new Canadian publication. (Fasten your bbs-belts, this is a
very rough, first outline!)

             ---------------------------------------

What is the single biggest challenge facing health professionals,
educators and parents looking after disabled and chronically ill
children today?

My bet would be.. Keeping up with a rapidly changing field of
treatment options, educational resources and specialized services
mushrooming all over this country and continent, from day to day.

Mastering this challenge of increasing complexity is not unique to
disabled consumers or their providers/caretakers: every single
sector of the business world, be it industrial or service field,
every subspecialty of science, from medicine to the cosmetic
industry, is facing the same struggle of having to keep up with
rampant technological change, increasing technological complexity
and unprecedented information overload, just to stay "ahead of the
service game" or "abreast of scientific developments", as the case
may be.

What is unique about disabled individuals and their caregivers is
that they have to keep up with all of the above, simultaneously,
with often less time, energy, financial resources and mobility to
access the information resources which hold the key to optimal
quality of care, education, employment and leisure in a rapidly
changing world.

You will tell me that there are hundreds of parent education
courses, workshops, seminars and symposia offered to parents,
teachers and therapists of special needs children, from coast to
coast, every year. True enough; but attending these seminars often
requires taking time off work, arranging for a baby-sitter,
travelling sometimes long-distances and investing in
ever-escalating registration fees and course materials, when time,
money and baby-sitters are already often scarce.

There are also thousands of support groups and advocacy networks
whose sole 'raison d'etre' or mission is to represent the needs of
disabled people and, conversely, collect and distribute information
about resources and services which might be of interest to their
membership. I applaud and believe in this advocacy movement with
all my heart and past experience of 20 years of working and living
with disabled children. However, it has been my experience that
different groups have different skills and strengths.  * Some excel
in collecting information , such as books, audio and videotapes,
pamphlets, training manuals and medical references, having refined
into a fine art the delicate interpretation of medical
terminology,  educational protocoal and technical jargon (such as
computer hardware/software)  into accessible,layman' language.  *
Others specialize in fund-raising and public awareness campaigns,
heightening public sensitivity to the needs of their constituency,
supporting medical research and making it possible to build or
improve first class hospitals, rehabilitation centres and
specialized recreation facilities.
* Yet other support groups specialize in people-to-people
networking, ie the crucial bridging of experience, information and
encouragement that can only happen between pateients or relatives
who have shared a common experience or illness.

We need all three kinds of support networks: the Information
Collectors, the Social Advocates and the Person-to-Person
Go-betweens. However rarely has the odd industrious and
particularly lucky family had the opportunity to cross paths with
all three types of networks and information brokers by the time
their child enters school, or ailing parent require nursing home or
chronic care. So, with preciously little leisure time available to
spend on the phone or scavenge libraries, most caregivers of
disabled individuals end up relying on the specialized expertise
and limited information resources of their primary care-giver or
educator to guide them through the maze of "The System" out there,
feeling overwhelmed and helpless to access this system on their
own, in most cases.
      (Continued in next message)

               A bientot, I hope...?

                                               Docteur Froggie.
===
 * DeLuxe/386 1.12 #3276 * Don't wait for inspiration:go after it with a club
 * QNet3 * ADANET:41/62/19:Ability OnLine - Toronto Canada - 416/650-5411

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