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By Penny Reed
In his motivational book, Who Moved My Cheese, Spencer Johnson,
the author uses an analogy of mice in a maze to help people recognize
and cope with change. In this inspiring story, the mice are looking
for "cheese". The cheese is, of course, a metaphor for
whatever we want to achieve in life: health, wealth, a good job,
happy relationships, success in an activity such as golf or tennis
or success in our jobs. Each of us has our own idea of what "cheese"
is, and we pursue it because we believe it is important. If we get
it, we often become attached to it. And if we lose it, or if it's
taken away, it can be very stressful.
As we work in the field of assistive technology, striving to help
school districts develop and/or improve their assistive technology
services, it is apparent that one of our challenges in successfully
providing assistive technology services, is that our "cheese"
keeps moving. Our "cheese" is the thing or things we must
do to be successful. Twenty years ago when voice output augmentative
communication devices first became available, our task was to figure
out who might be "eligible" for these very expensive,
very complicated devices. Then we were to refer them to a clinic
that had staff members who could determine which augmentative device
might be the "right" one. We spent a lot of time defining
specific criteria for "eligibility" for these devices.
It was especially critical that a child be at a specific developmental
level and no one functioning below that level could even be considered.
If a child was deemed eligible to use a voice output augmentative
communication device, then someone in the school needed to learn
to program that device. It was very specialized and other staff
members typically were not expected to know this very technical
information.
As assistive technology proliferated and became less expensive
and easier to use, we have had to revise our system for prescribing,
programming and managing the use of much of it, including voice
output augmentative communication devices. All children are considered
"eligible" candidates for voice output if they are not
able to speak or their spoken words are not readily understood.
There are hundreds of voice output augmentative communication devices,
many of them quite inexpensive and easy to program. Now the standard
expectation is that several people would know how to operate the
device and update or expand the messages as needed for new situations
Prior to 1990, a team at a specialized clinic made nearly all decisions
about what assistive technology was appropriate for a given child.
IDEA changed that with the requirement that every child was entitled
to a "functional evaluation" of their need for assistive
technology conducted in their "customary environments".
As many school districts geared up to provide these evaluations,
they often appointed someone to be the "AT Specialist"
or created a small team of people to try to learn about AT and provide
AT Services. These individuals or teams gained specialized knowledge
and an internal system for referral to them was developed. In many
of these districts, there were limitations on anyone outside of
this specialized team making any decisions about assistive technology.
IDEA '97 has once again "moved our cheese"! Now, every
IEP team must "consider" the need for assistive technology.
Federal law and corresponding state law empowers the IEP team to
make decisions about assistive technology. No longer is a specialized
team the most feasible way to comply with the law. Now, at least
one person on every IEP team must have a basic understanding of
assistive technology. Together they must be competent to make decisions
about what assistive technology, if any, might be feasible for a
child. Since it is best practice to "try before we buy"
and because the IEP team's level of knowledge and their experience
with AT may be limited, they must have access to assistive technology
for trial use, so they can insure that it is a good solution before
they commit the district to purchase assistive technology for a
child. They must also know and be able to use effective decision
making processes and have available to them supportive forms that
guide them appropriately through all of the necessary steps.
Other events also cause our "cheese" to be moved. Recently
many school districts which have worked hard to have an effective
AT "system" are experiencing having the cheese moved,
in a dramatic way. As the result of complaints, some districts have
been told that their process as they currently implement it, is
not acceptable. The districts that have had an AT Specialist or
a specialized AT Team who were the only ones who could "approve"
or "recommend" the use of AT may be violating student's
rights. In these situations, when anyone in the district wanted
to try AT for a student they were required to contact the AT Specialist
or AT Team. There were specific referral forms to be filled out.
Then the AT Specialist or AT Team came to observe and possibly work
briefly with the child. That person or persons recommended and obtained
the specific AT to be used. They tried to respond to these requests
in a timely fashion, but did not necessarily implement the procedural
safeguards of prior notice, permission to evaluate, or the specific
time limit (in Wisconsin it is 90 days). Because they viewed their
AT process as an informal "assessment" process, they did
not believe they needed to treat it as an "evaluation".
State departments of education including the Wisconsin DPI, after
reviewing these types of situations, have said that "If it
is a question of whether or not the child needs assistive technology,
you must treat it the same way you would treat any other question
of eligibility for a new service." That means that the district
must follow procedural guidelines in answering the question, "Does
this child need assistive technology." Not every school district
will find this to be a problem, but for districts that have had
a very closed system, major changes are needed and it is both frustrating
and challenging to need to revamp an entire service system.
In trying to support and assist school districts, WATI has developed
and taught an assessment process that includes: gathering information,
making a decision, implementing that decision on a trial basis,
evaluating the results of the trial, and making a more final decision
based on what has been learned. This process can be used as part
of a formal "evaluation" process (when appropriate), as
part of the IEP process, or as part of a less formal process to
problem solve (e.g. which specific AT might be tried, in what order
and when) as a step in implementing the IEP. This third situation
would occur when the IEP team has already decided that AT will be
provided, but were not sure exactly which tool might work best for
the child. Either the IEP team or a specialized "AT team"
working with the parents and service providers can use the WATI
decision making process. It is intended to be a flexible process
that can help teams change and adapt as their "cheese moves."
But it does require that we think about how and when we use this
process. If a child has never received AT devices or services and
the question of whether s/he needs AT devices or services is being
raised, then the process used to answer that question must include
prior notice, permission to evaluate, and a completion of the process
within the prescribed timeline. This is critical, to do any less
is a violation of the child's rights as guaranteed by IDEA.
In Who Moved My Cheese, one of the mice gains insight as he attempts
to deal with the lack of cheese. At one point he makes a list of
what he has learned. He observed: "Change Happens, They keep
moving the cheese". He advises the other mice: "Anticipate
change, adapt to change quickly, enjoy change, and be ready to change
and enjoy it again." These words of wisdom can help us deal
with many things in this rapidly changing world. Assistive technology
service delivery is one of them. We don't know what will cause our
"cheese" to move the next time. But we do know it will
move!
Reference: Johnson, S. (1998). Who Moved My Cheese. New York: G.P.
Putnam & Sons
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