FUTURE REFLECTIONS
Spring/Summer, 1994
THE NATIONAL FEDERATION OF THE BLIND
MAGAZINE FOR PARENTS OF BLIND CHILDREN
Barbara Cheadle, Editor
Published by the
National Federation of the Blind
1800 Johnson Street
Baltimore, MD 21230
(410) 659-9314
ISSN 0883-3419
Vol. 13, No. 2 Barbara Cheadle, Editor Spring/Summer, 1994
Contents
Braille Literacy Campaign Goes National
Linda Gets a Cane: Parents Prevail in Due Process Hearing
by Barbara A. Cheadle and Douglas C. Boone
Part-Time and Summer Jobs
by Doris M. Willoughby
Going Camping
by Gail Katona
An Average American
by Nancy Martin
Discriminatory Standards for the Blind in Standardized Testing
by Scott LaBarre
Our Hope for the Future
by Dawn Neddo
Parent Power: Reports from Divisions and Chapters of the
National Organization of Parents of Blind Children
Braille Competency Test Ready for Use
A Tribute to Kate
by Kathy and Nick Andrus
Hear Ye! Hear Ye!
BRAILLE LITERACY CAMPAIGN GOES NATIONAL
It would be hard to pick a specific event from which to date the
national Braille literacy campaign we are now waging in this
country. Since Braille bills (laws which promote the right of blind
children to learn Braille) have become our primary weapon in this
war against Braille illiteracy, one logical date would be the first
attempt (initiated, of course, by the National Federation of the
Blind) to pass such a Braille bill through a state legislature
(Maryland, 1986). Although this attempt failed (Maryland would not
pass a Braille bill until 1992), other NFB state affiliates
immediately saw the possibilites and started pressing for Braille
legislation in their respective states. A Model Braille Bill was
soon developed by the NFB; and today, eight years later, 25 states
have enacted Braille literacy legislation.
On the other hand, the legislative strategy clearly came after
years of other campaign activity; the publication of article after
article year after year in Future Reflections and the Braille
Monitor; confrontations and dialogue with the professionals who set
and implemented Braille policy; testimony at public hearings; and
negotiations for Braille in case-by-case IEP meetings and due
process hearings. The establishment in 1993 of the Braille Readers
are Leaders Contest by the National Organization of Parents of
Blind Children was a deliberate attempt to help turn the tide of
rising Braille illiteracy; as was the founding of the National
Association to Promote the Use of Braille (NAPUB), which celebrates
its tenth anniversary at the 1994 NFB Convention.
Whichever event and year we might choose to mark the beginning of
the current war against Braille illitarecy, there is one thing
about which there is no doubt: that the National Federation of the
Blind has been the unchallenged leader in this war. We were the
ones calling national attention to the problem when others were
ignoring or denying it, and we have been the leader in formulating
and implementing the solutions to the problem.
In January, 1994, at the NFB Washington, D.C., Seminar, we further
demonstrated our determination and will to establish Braille
literacy as a national priority: we called for a national Blind
Person's Literacy Rights and Education Act. (The Washington
Seminar, by the way, is an event in which members of the Federation
gather at our nation's capital to discuss with our senators and
congressmen the year's legislative priorities for the blind. Fact
sheets are distributed and discussed at an orientation meeting,
then teams of NFB members disperse over a three-day period to
present these priorities to congressmen and -women.)
Although we have made progress with our state Braille bills, the
fact remains that it took us eight years to pass legislation in 25
states. We must, if we can, speed up the process so that children
in the other 25 states do not have to wait another eight years for
Braille instruction. Besides, Braille literacy is a national
problem which cries out for a national commitment; and, with parts
of the Individuals with Disabilites Education Act (IDEA) up for
reauthorization, 1994-1995 is the time to do it!
Here is the text of the fact sheet distributed at the 1994 NFB
Washington Seminar:
FACT SHEET<R>BLIND PERSONS' LITERACY RIGHTS AND EDUCATION ACT
BACKGROUND: The National Literacy Act of 1991 defines literacy as
An individual's ability to read, write, and speak in English and
compute and solve problems at levels of proficiency necessary to
function on the job and in society; to achieve one's goals; and to
develop one's knowledge and potential. This definition points up
the critical importance of emphasizing high-quality literacy
training programs for all Americans. For blind Americans,
especially school-age youth, the need is no less critical. Yet
surprisingly few students who are blind or visually impaired
receive instruction in Braille as a part of their elementary and
secondary education programs.
Blind students are generally defined as those who see less than ten
percent of what is seen by someone with normal eyesight. During the
present school year there are approximately 50,204 such children
enrolled at the elementary and secondary levels in the U. S. Only
4,385 of these students read Braille. The vast majority use print
materials even in situations in which reading with sight is an
unrewarding, never-ending daily struggle. Educators often resist
teaching Braille until students are unable to make any progress at
all in school by using print. As a result, Braille has become not
the method of choice but the method of last resort.
EXISTING LAW: The Individuals With Disabilities Education Act
(IDEA) contains federal standards for special education and related
services to be provided to children with disabilities throughout
the U.S. The most important standard is that each such child is
entitled to a free appropriate public education. Education
agencies, both state and local, receive Federal funding to assist
in meeting this mandate. When special education services are
provided to a child, there must be an Individualized Education
Program (IEP) to describe the needs of the child for special
instruction, the services to be provided, and the goals to be
achieved. The law also requires the use of qualified personnel to
deliver services. Federal funds are available to support personnel
training programs.
The components of an appropriate education are not strictly defined
in IDEA. As a result it is easy and tempting for school personnel
to determine a child's needs largely on the basis of the school's
capacity (or lack of capacity) to provide special instruction or
services. This being the case, blind students who may have even a
limited ability to read print are guided toward receiving
instruction in that form instead of using Braille. Procedural
safeguards, including the right to challenge decisions through
administrative and court appeals, exist under IDEA, but such
proceedings are time-consuming and costly in financial and
educational resources.
PROPOSED LEGISLATION: Congress should amend the Individuals with
Disabilities Education Act to include provisions for strengthening
programs of Braille literacy instruction and the cost-effective
transcription of instructional materials into Braille. This
proposal, entitled the Blind Persons' Literacy Rights and Education
Act, is patterned after laws with a similar purpose which
twenty-one states have now enacted. The following provisions are
included: (1) definitions of the terms blind or visually impaired
children and Braille Literacy Plan, including a presumption in
favor of teaching Braille for such children; (2) specification of
requirements for a Braille Literacy Plan to be included in the IEP
of each child whose vision restriction meets the definition of
blind or visually impaired; (3) specification of standards and
procedures to insure that qualified personnel are provided for
Braille instruction; and (4) specification of purchasing conditions
to insure that each edition of a text or other material obtained is
also supplied in an electronically stored digital text format.
The Braille Literacy Plan required for each blind student will
assure an individualized literacy skills assessment. Braille for
many may not be the exclusive literacy tool, but its potential
usefulness even to those who can also read some printed matter must
not be overlooked. To the extent necessary as determined and stated
in the IEP, Braille instruction would be provided so that the
literacy skills of blind and visually impaired students are
generally on a par with literacy skills achieved by sighted
students of comparable ability and grade level. Wider availability
of Braille materials and competent instruction in their use will be
essential in achieving this goal. Therefore, provisions for teacher
training and cost-effective provision of texts on standard computer
diskettes have been included.
NEED FOR LEGISLATION: It is the policy of our nation as stated in
the National Education Goals that by the year 2000 Every adult
American will be literate and will possess the knowledge and skills
necessary to compete in a global economy and exercise the rights
and responsibilities of citizenship. In order for blind adults to
achieve this goal, literacy instruction must be strengthened for
children. The direction of current trends and educational
programming shows that this goal will not be achieved without
deliberate corrective action. According to official child count
figures supplied annually by state and local education agencies,
thirty-one percent of the blind students at the elementary and
secondary levels are nonreaders, and that percentage increases
every year. The number who read Braille is correspondingly
declining.
The experience gathered in many states over several years shows
that a legislative response is needed to reverse this trend of
growing illiteracy among blind school-age youth. Amendments to
IDEA, expected to be considered by Congress during 1994, would
provide the most appropriate vehicle for this urgently needed
remedial legislation. By passing the þBlind Persons' Literacy
Rights and Education Act, Congress can provide the leadership to
ensure that blind students graduate from our nation's schools
literate and armed with the necessary skills to be first-class
citizens of our society.
LINDA GETS A CANE Parents Prevail in Due Process Hearing
by Barbara A. Cheadle and Douglas C. Boone
Barbara Cheadle, Editor: Three years ago I wrote an article for
Future Reflections about the canes for preschoolers revolution. I
concluded that except for individual skirmishes and disagreements
about the length of the cane, type of tip, and other such details,
that the revolution was pretty much over. After all, the American
Foundation for the Blindþthat bastion of sacred and time-honored
traditions in the field of blindnessþwas selling kid-size canes. I
couldn't think of a surer sign that giving canes to small children
was no longer considered a radical act by the O&M profession.
However, victory was perhaps announced too soon. For even as I
wrote that article I was well aware of another trend that was
developing in the O&M field: the use of pre-cane devices.
The idea of pre-cane devices has actually been around for some
time. It began, perhaps, when professionals noticed that little
kids would use certain push toys as a bumper. Now, there is nothing
profound about this discovery. Any blind kid who is curious and has
been encouraged to move about and explore will discover that
holding a stick-like object out in front of him or her will
eliminate some bumps and falls. But simultaneously with the
acceptance of the notion that even preschoolers can use a regular
cane, came more experimentation with these so-called pre-cane
devices. Initially, the devices were unadapted toys, such as the
hula hoop, push-carts, and toy push-poppers. Then adaptation were
made: the hula hoop was weighted with sand, the push-popper reduced
to a stick with a wheel on the end. Then whole new devices were
created: walker-like pre-canes were created out of light-weight
plastic tubing.
These devices are often touted as beneficial for the
multiple-handicappedþchildren with cerebral palsy who had an uneven
gait, or a weak grasp, or other motor problems. As such, they have
come to be called alternative mobility devices, or AMD's. However,
the same apparatuses are also called pre-canes and are used with
blind children who have no other disabilities as a preliminary step
or stage before going on to instruction with a regular long white
cane.
The obvious questions this practice presents are: What does an
alternative mobility aid, or pre-cane device, do that a cane
doesn't? Does it develop muscles, motor skills, and movement
patterns that are necessary for regular cane use? Is it just as
effective as a cane in a variety of settingsþhallways, stairs,
curbs, playgrounds, pavement, gravel, and so forth? Is it easier to
use? Is it easier to transfer from a pre-cane to a cane as opposed
to beginning with the cane? Does the pre-cane give the user the
same kind of sound cues and feedback that the tap of a cane gives?
Does it allow the user to walk at a normal pace and gait? If the
answer to even one of these questions is No. then the next question
I pose is: What's the point? If regular cane use is the desired
goal, and if young kidsþincluding many with multiple
disabilitiesþcan use the regular cane effectively right from the
get-go, why take a detour?
That was the question Dale and Arlene Delker of South Dakota found
themselves asking their school district in the fall of 1992. It was
a simple situation. The Delkers wanted their seven-year-old totally
blind foster daughter, Linda Perez, to switch from the pre-cane
device she was using in school to a regular long white cane, and to
get instruction in its use. (Linda had used a toy push-cart in the
fall of 1991, then was later given a Connecticut pre-caneþa
rectangular shaped device made out of hollow tubing. However, the
Delkers lived in a rural setting with lots of dirt, gravel, and
uneven weedy, grassy areas around the home, and the Connecticut
pre-cane was not usable in this environment.) The Delkers had
attended several seminars and events sponsored by the NFB of South
Dakota and were regular readers of Future Reflections. Through this
contact with blind persons, they had become convinced that Linda,
despite her other developmental delays, was ready to use a cane.
The school district responded by contracting with the South Dakota
School for the Visually Handicapped for a mobility evaluation.
Based upon the results of this one-and-one-half-hour evaluationþan
evaluation in which the child never touched a white caneþthe school
district refused the request. Furthermore, even though Linda used
a long white cane at home (she had some private instruction from a
blind teacherþalso a member of the NFB), she was not even allowed
to bring the cane to school.
The Delkers were not going to give up so easily. They knew what
their daughter needed, they knew their rights, and they were not
going to be deterred. They then requested an independent
evaluation. When the school district refused the request, they
proceeded, with the help of Karen Mayry of the NFB of South Dakota,
to arrange an independent evaluation for their daughter with
mobility instructor and evaluator Douglas C. Boone of Nebraska. In
an attempt to outmaneuver the Delkers, the school district filed
for a due process hearing with the South Dakota Board of Education
on April 23, 1994þabout two weeks before the Boone evaluation was
to take place. The school district asked the board to uphold the
district's evaluation and to deny reimbursement to the Delkers for
the independent evaluation conducted by Doug Boone. The Delkers, of
course, not only asked for reimbursement but also asked the South
Dakota Board of Education to rule on the question about Linda's
readiness to use a long white cane.
In the course of preparing their case, the Delkersþagain, with the
assistance of the NFB of South Dakotaþgathered some information
about pre-cane devices from Joe Cutter, a mobility instructor from
New Jersey. Mr. Cutter's credentials included extensive experience
in working with blind and blind multiply handicapped children from
infancy through the early school years. Mr. Cutter began giving
canes and cane instruction to young blind children in the very
early years of the canes for pre-schoolers revolution. He also
experimented with pre-cane devices and alternative mobility aids
with his young blind students. Mr. Cutter was not available as a
witness for the Linda Perez case, but he wrote a letter for the
Delkers about his experiences. The Delkers' attorney used
quotations from this letter (along with quotations from other
letters and articles by progressive O&M instructors) in the brief
submitted to the board for the due process hearing.
Because of the valuable information and insight this letter sheds
on the use of pre-cane devices, it is reprinted in full following
this introduction.
The Perez case depended most heavily, of course, upon the
independent mobility evaluation conducted by Douglas C. Boone. The
heart of this article, therefore, is Mr. Boone's description of his
involvement with the case, the complete text of the evaluation he
conducted, and the results of that evaluation.
Parents often find themselves in a dilemma about evaluations. How
do they know if a mobility evaluation is thorough and really covers
what it should cover? What should be observed? How long should it
take? Mr. Boone's evaluation is an excellent model of a
well-planned and conducted cane readiness and mobility evaluation.
The decision of the board in this case was clearly influenced by
the completeness of this evaluation. There was simply no comparison
between the earlier, and clearly inadequate, mobility evaluation
and the one conducted by Mr. Boone.
Finally, we conclude this article with the findings of law and
decision reached by the South Dakota Board of Education in the
Douglas School District v. Delker/Perez case. In brief, the board
concluded that the school district had not provided the Delkers
with an appropriate mobility evaluation, and awarded the Delkers
reimbursement for the independent evaluation conducted by Douglas
Boone. This was, for all practical purposes, a victory for the
Delkers. (The board declined to rule, for technical reasons, on the
Delker's question about Linda's readiness to use the cane. It seems
that the school district refused to recommend any IEP mobility
goals until after the due process hearing. Therefore, there were no
IEP goals regarding mobility upon which the board could base a
decision. The board did state that The school's action in delaying
a decision on Linda's IEP until the due process hearing was not
appropriate under regulations.)
The school district correctly interpreted the board's decision as
a mandate to use the Boone evaluation as the foundation for
developing Linda's IEP mobility goals. Today, Linda uses her cane
in school and has regular mobility lessons with her long white
cane.
But none of this would have been possible without the National
Federation of the Blind. Because of the NFB the Delkers had a
steady stream of information and inspiration coming regularly
through their mail box in the form of Future Reflections and other
publications. Karen Mayry, President of the NFB of South Dakota,
gave freely of her time to advocate for Linda in IEP meetings and
to locate information and resources for the Delkers. It was through
the NFB that the Delkers met competent, confident blind adults who
gave them a vision of what Linda's future could beþif she had the
right training.
Here is the letter from Joe Cutter regarding pre-cane devices,
followed by the Boone evaluation and the final due process
decision:
May 23, 1993
Mrs. Karen Mayry, President National Federation of the Blind of
South Dakota 919 Main St., Suite 15 Rapid City, S. Dakota 57701
Dear Karen:
As an Orientation and Mobility Instructor with the New Jersey
Commission for the Blind and Visually Impaired, I became concerned
regarding our recent conversation about a seven-year-old blind
child. There is apparently a disagreement between home and school
over which travel tool promotes independent ambulation, and thereby
increases safety, effectiveness, and confidence. The child was
evaluated by an Orientation and Mobility Instructor. The long cane
was determined to facilitate her independent movement. She took to
it, as you said, like a duck to water. On the other hand, the
school is promoting the use of some other tool that they refer to
as a pre-cane. I am moved to share with you my thoughts on
differences in points of view over this concept of a pre-cane.
The term pre-cane implies that the structure and function of the
device fits into some continuum of progression for using travel
tools and that the cane would be the next step along this assumed
progression, once the blind child has mastered its predecessor.
After twenty-three years of experience as an 0 & M Instructor (I am
also a certified Teacher of the Blind and Visually Impaired and
possess a Masters of Arts in Teaching the Developmentally
Handicapped), I believe that this notion of a pre-cane is more
fancy than fact. What we know about children in general is far less
than what we think we know. Blind children are particularly
vulnerable to adult assessments that do not develop from
observations of children, but rather are imposed upon them by an
adult-centered model.
There is no research of which I am aware that validates or
substantiates this pre-cane concept that some other tool must be
used prior to the use of a cane. In addition, my personal
experience does not support this notion. I have used a variety of
tools to experiment with the facilitation of movement in blind
children, such as a hula hoop, a Connecticut Pre-Cane, a t-shaped
cane with roller tip, and so forth. The components of movement
needed to use many of these devices are actually more complex and
may demand more sophisticated motor schemes and planning than what
is required by the simple design and function of the cane.
Certainly a blind child's gait is negatively affected by an
inappropriate travel tool.
The essential question is: Does the cane facilitate movement when
the child is exploring the world and safely moving about in it? The
best way to know is to follow the child's lead. A child who takes
to a travel tool like a duck to water is telling the adult what is
best. When a child's travel tool promotes a sense of security and
autonomy in free movement, then much more brain power is available
for orientation and for enjoying the feeling of the movement
itself. Over the years I have introduced the cane to many
childrenþsome were as young as twenty months of ageþwithout a
pre-cane device. As they matured these children engaged in higher
levels of prehension and technical skill, and in time learned
appropriate adult techniques. My experience tells me that
introducing a cane much later in a child's life presents a barrier
to independent movement and to the development of the grace and
poise that is within them.
I hope these thoughts assist the school in reevaluating their
present position towards independence in travel for this
seven-year-old child. In my years of teaching orientation and
mobility my thinking has changed about the readiness of blind
children to travel with a cane. What changed over time were not the
children but my perception of their abilities and readiness. It is
this area of what we think we know that shifts over time.
Twenty-three years ago if I had known to follow and observe the
child more carefully, many more blind children would have had the
opportunity to develop independent travel concepts and skills much
earlier in life. I know now that the cane, more than any other
tool, facilitates the movement of the walking blind child. This
seven-year-old child is at a crossroad. The school can either
facilitate or interfere with development. How exciting it would be
for home and school to be offering the same travel tool with
similar enthusiasm and commitment.
Sincerely, Joe Cutter, 0rientation and Mobility Instructor New
Jersey Commission for the Blind and Visually Impaired
Eitor: There you have Joe Cutter's letter about pre-cane devices.
Next is Doug Boone's description of the independent mobility
evaluation he conducted for the Delkers:
ERRING<R>ON THE SIDE OF POSITIVE<R>EXPECTATIONS
by Douglas C. Boone
In the middle of April, 1993, I received a phone call from Karen
Mayry, President of the National Federation of the Blind of South
Dakota. She informed me that a seven-year-old blind person, Linda
Perez, was not receiving instruction in the use of her long white
cane. Furthermore, she was not being encouraged or allowed to use
her cane in the school. The wishes of Linda and her parents, as
presented to the Douglas School District (which is near Rapid City)
during IEP meetings were being discounted in favor of the
recommendation by the Regional Orientation and Mobility (O & M)
Consultant who had prescribed a pre-cane device for Linda.
Linda, Karen said, was developmentally delayed as a result of a
number of problems associated with premature birth and low birth
weight. She also informed me that Linda had worked a few times with
Konnie Hoffman, a blind woman who is a member of the Rapid City
Federation and a teacher with special education background.
Konnie's work with Linda revealed a high degree of motivation for
using the long white cane and an appreciation for the fact that an
adult would have and use a cane (Miss Hoffman is a cane user). As
a result of this initial success, Linda's parents, Mr. and Mrs.
Dale Delker, had requested that the Regional O & M consultant
evaluate her ability to use the cane. The instructor performed the
evaluation, without giving Linda the opportunity to use a cane, and
concluded that Linda was not yet ready for the cane!
As a private consultant in the field of blindness/visually impaired
issues, it has become my policy not to rely on others' perceptions
of a situation. Instead, I like to evaluate each situation or human
need personally and then pursue a course of action which is based
upon fact. I also proceed on the assumption that it is best to err
on the side of positive expectationþI always first assume that a
given task or challenge CAN be accomplished by the person with whom
I am working.
The foundation of experience and philosophy I bring to this process
consists partly of my experience in the employ of three state blind
rehabilitation agencies. While an employee of the state
rehabilitation agencies I was often called upon to consult with
educational facilities regarding the needs of blind and visually
impaired adults and children in issues related to cane travel and
industrial technology classes. Also vital to my foundation of
knowledge is the extensive sleep-shade training I received when I
first entered the field, and my continued philosophical growth by
way of my association with the literature and members of the
National Federation of the Blind. With this background, I set about
designing an appropriate evaluation of Linda Perez's ability to
function with the long white cane. Here is the text of that
evaluation:
PROPOSAL FOR O & M ASSESSMENT
The following is a proposal for contract services to assess the
feasibility of the introduction and subsequent instruction in the
use of the long white cane, as an aid to mobility, for Linda Perez,
beginning on Sunday, May 9, 1993, and concluding on Monday, May 10,
1993.
The assessment will be conducted in a two-phase process: at the
student's residence on the first day and at the student's school on
the second day. The assessment schedule will help to minimize the
Hawthorn effect by allowing for the development of rapport with the
consultant in the secure environment of the home on the first day.
This arrangement will also allow for parent observation of the
process. The second day of the assessment will provide for an
expansion of the assessment in a more structured environment with
observation by interested instructional staff. The second day will
seek to provide a review of those areas (listed below) which were
assessed on the first day. The provision of two days of assessment
will seek to minimize the chance that the student might have an off
day and thus skew the results of the assessment. Both days of the
student's assessment will cover, to the extent possible, the
following:
1. Establish rapport between the evaluator and parents and student.
2. Begin evaluation of student's: a. expressive and receptive
language skills, b. level of community/environmental awareness, c.
level of social awareness.
3. Evaluation of student's ability to collect, correctly assess,
and/or use auditory, tactile, and other available environmental
information.
4. Provide for the evaluation of the student's balance under a
variety of situations and conditions.
5. Evaluation of the student's ability to grip the cane and begin
manipulation of same.
6. Instruction in, and evaluation of, the ability of the student to
slide or tap cane in such a manner as to provide for a clear path
of movement.
7. Confirm the ability of the student to maintain, at a level
consistent with that of beginning students, incorporation of the
following elements in the use of the cane: a. grip, b. slide or
tap, and c. acceptable width of arc.
8. A basic assessment of the student's psychomotor skills in
general.
9. An assessment of student's maturity level and ability to
maintain concentration necessary for beginning use of the cane.
10. Evaluation of the student's ability regarding stowing the cane
in an appropriate location and retrieval of the stored cane.
All of the above will serve to determine the readiness of the
student to begin a course of instruction in the use of the long
white cane.
Of necessity the assessment will be conducted at a pace
commensurate with the student's attention and tolerance levels. To
provide for these considerations, the assessment will be
interspersed throughout both days of evaluation.
A written report will be sent by FAX to the school no later than
the morning of May 14, 1993, and a FAX sent to the parents to a
location of their choosing. This will be done in order to acquaint
all interested parties with the findings of the assessment.
The summarized results of the evaluation are provided below:
O & M EVALUATION REPORT
Locations For The Assessment: Student's residence, Rapid City Mall,
and the Douglas School Badger Clark building, Carousel building,
and surrounding school environment as it relates to Linda's
instructional needs.
The evaluation began on the morning of May 9, 1993, at the
residence of Linda Perez. My first efforts were directed toward
establishing rapport with Linda and her parents. I asked Linda to
get her cane. Linda independently found the cane, with only a
verbal prompt from her parents to tell her that the cane was on the
porch. Linda was receptive to becoming acquainted, and I soon asked
her to show me her favorite toy. She took her cane, without
prompting, and returned with a busy box. Approximately 15 minutes
later I asked Linda to put her toy back, which she did without any
difficulty. I then asked her to get another toy. This time she
chose a puzzle. She came back to the table and began working on the
puzzle. After a short time, she asked about the location of her
cane. It was at this point that I demonstrated to Linda how she
could store the cane under her chair. Linda exhibited a good
attention span while working on her puzzle.
Mr. and Mrs. Delker next provided me with information regarding
various self-help skills which Linda is able to accomplish. While
this is not directly related to the assessment of Linda's ability
to use a cane, a cursory review of her level of functioning is
desirable in order to understand her behavior when using the cane.
The discussion revealed an overall development in the range of a
three- to four-year-old. Her parents stated that Linda has specific
tasks to do in the home. A recommendation was made to encourage
Linda to become involved in the selection of her own clothing since
activities of this nature contribute to independent thinking and
concept development. It should be noted that this portion of the
assessment was for the benefit of the consultant, and was/is not
intended as an official finding regarding age-appropriate
development.
Evaluation Of Outside Use Of The Cane: As we prepared to leave the
house for the outside evaluation, Linda prompted her parents by
asking for her cane. I believe this was a significant act,
demonstrating an awareness of the cane as a tool for independent
mobility.
As we came down the ramp from the house, Linda found a section of
plywood with the cane, then stomped on it to confirm the feedback
she had received from the caneþan act not inconsistent with
beginning users of the cane of any age. This demonstration of an
awareness of the auditory feed-back available from the cane is
significant in view of the limited experience Linda has had with
the cane.
Once in the yard, Linda followed her father's voice toward the
place where the bus stops. Linda continued to use her cane in a
somewhat sporadic arc, mostly keeping it near to the ground but
occasionally raising it. Linda displayed an ease with using the
cane in either the right or left hand. This ambidextrous approach
to the cane is a skill well worth fostering, as it provides for
independent mobility when carrying heavier objects which can be
shifted between hands to minimize fatigue. While I generally
introduce this skill later in a student's instruction, I do not
view the early alternating of hands to use the cane in a negative
light.
From the bus stop we proceeded to the lamb pen. Again, Linda
followed her father's voice. She used the cane surprisingly well
over uneven surfaces, including tire ruts, unmown grass, mud, and
loose gravel. When she arrived at the lamb pen, she was not facing
the pen, but was parallel to it. Her father made note of this fact
and prompted her to put the cane in front of her. She extended the
cane and swung it to her left, found the fence with the cane, then
turned and appropriately faced the lambs. This action represents an
understanding of the value of the cane as a tool to collect
information from the environment.
Next, I asked her to find the chicken house. (I had heard a chicken
as Mrs. Delker was gathering the eggs.) Linda needed one additional
auditory cue, then proceeded in the direction of the building.
After locating the chicken house she turned and approached the feed
shed which Mr. Delker had entered. After arriving at the feed shed,
I showed Linda how to determine the height of a step by using her
cane. The step was inordinately high, approximately fourteen inches
off the ground. After several exploratory tries, Linda crawled into
the shed. At all times she maintained contact with the cane or
remembered where she had placed it. This behavior demonstrated
Linda's awareness of the value of the cane in enabling her to move
effectively in her environment. As we returned to the house Linda
continued to use her cane while following sound cue information
from her parents' voices.
Evaluation At The Mall: At my request, Mrs. Delker drove Linda and
me to the mall for an evaluation of cane usage in an unfamiliar
location. Upon arrival at the mall, Linda unbuckled her seat belt.
This was the first time she had self-initiated and independently
accomplished this task.
As we entered the mall Linda immediately noticed the sound
feed-back available from the cane, and swung her cane with
additional vigor. Initially, Linda seemed a little intimidated at
the prospect of walking about using only her cane and not hanging
on to her mother's hand. This behavior was not surprising given her
limited instruction in the use of the cane to date. Most people
tend to experience some degree of fear and apprehension when
encountering new environments.
As we walked in the mall, Mrs. Delker asked Linda to find a bench.
Linda, without further information, reached out and found the bench
using her cane. During this portion of the evaluation I observed
multiple incidents of Linda's swinging the cane vertically and
horizontally at waist height or above. After a number of
interventions by Linda's mother failed to produce a controlled arc,
I suggested to Mrs. Delker that she briefly take the cane from
Linda the next time she failed to heed a verbal warning to use the
cane properly. Linda once again inappropriately swung the cane.
Mrs. Delker took the cane and told Linda she would have to walk the
mall holding her (Mom's) hand, not using the cane, if she were to
again swing the cane improperly.
At this point I suggested that perhaps Linda was tired and we
should conclude the evaluation. It is significant to note that no
additional misuse of the cane occurred as we returned to the car!
In my opinion, the modification of Linda's negative behavior, which
coincided with the prospect of losing the cane because of misuse,
demonstrated the value she places on the cane. As we left the mall,
Linda found a two-foot drop-off with the cane. She knelt down to
feel the drop-off, sat down so that her feet were on the lower
surface, then stood up again. We returned to the car and concluded
the day's activities.
Evaluation In The School Environment: The evaluation on the morning
of May 10, 1993, was conducted at Linda's school and included the
Badger Clark building, Carousel building, and other areas used in
the provision of Linda's education plan.
I began the school portion of the evaluation by observing Linda
exiting her main school bus and moving to the small bus in which
she waits until a school staff member comes to escort her to the
building. In going from the large to the small bus, Linda exhibited
excessive vertical raising of the cane similar to what I had
observed in the mall on Sunday, May 9, 1993. When leaving the bus
and encountering the bus steps, Linda did not seem to know how the
cane could provide information regarding the step height. Both of
these observed deficits do not represent inability, but instead
reflect lack of instruction and consistency of cane usage. It is
worth noting that when Linda went up the steps to the second bus,
she seemed to instinctively use the cane to locate the next step.
Once again, she showed her appreciation for the cane by maintaining
constant contact with it at all times.
After a short wait, two school staff persons came to the bus to get
Linda. I introduced myself and let them know I was present for the
day to observe Linda using the cane at her school. Linda then began
to follow the staff to the building, located a metal grate on the
sidewalk, crossed it, and proceeded into the building. She followed
the staff persons down the hall, located the door to her classroom
with her cane, and entered. Without asking Linda's permission, a
staff person took the cane from her and hung it up. At that point
I offered to put on a pair of sleep-shades and demonstrate how the
cane can act as an effective tool in mobility. None of the school
staff indicated a desire for me to do so.
Linda's first class was physical education, and it was necessary to
walk approximately one-and-a-half blocks outside to the track area.
The staff person who was taking her to the track referred to the
cane as a stick. I explained that the proper term was cane, and she
apologized. I informed her that no apology was necessary as no one
could expect her to know all of the terms related to blindness and
visual impairment.
As we continued, I again observed the ease with which Linda
switched the cane from one hand to the other. At one point, Linda
walked off the sidewalk and onto playground gravel. When asked by
the staff person to get back on the sidewalk, Linda located the
sidewalk with her cane and, after some independent re-orientation,
continued in the proper direction. At another point Linda stepped
off the sidewalk onto a grass edge and seemed to be exploring and
experimenting with her cane. This action of using her cane as a
tool to collect information and to satisfy her curiosity is yet
another indicator of her readiness to use the cane.
At one point, the staff person grabbed the cane and was teasing
Linda by pulling on the cane and saying they were going to get her
with it. I asked the staff person not to engage in this kind of
activity because Linda, like most students, will benefit from
positive reinforcement in the proper treatment of equipment; be it
a baseball bat, eyeglasses, or a cane. These examples of the
staff's lack of knowledge regarding blindness are not a negative
comment on the staff personnel, but rather reflects the need to
empower staff through a specialized in-service training conducted
by professionals and blind role models.
As we came back from physical education and were approaching the
building, the staff person asked me if I wanted Linda to trail
along the wall. I told her that I preferred that Linda not do this
since the cane could find things for her which she would miss if
she were just trailing the wall. Furthermore, by using the cane
Linda would be developing transferable skills. When asked for
additional information I explained that if a maintenance worker or
teacher left a tool box or some other item in the hall, trailing
the wall would result in a collision. On the other hand, when using
the cane correctly, items hurriedly placed in the hall could be
easily detected and walked around. To the credit of the staff
person, this explanation made sense to her.
Just before we entered the building Linda began to tap more
heavily, again indicating her ability to use echo location
information produced by the cane. She stomped a few times, to
confirm the cane information, and proceeded into the building. Once
inside, her speed increased as she walked down the hall without
trailing. Soon she asked the staff person if she could stop by the
office and was allowed to do so. When she was in the proximity of
the office, she heard sound cues coming from within. She extended
her cane to her left and entered the office without contacting the
door. Even the staff person commented on how well Linda was doing
with the cane.
As Linda left the office, again smoothly passing through the door,
she turned left to proceed to her home room. The staff person and
I arrived at the home room and paused; Linda continued past the
door approximately thirty feet. She stopped, without comment from
either the staff person or myself, turned around, and walked back
to the door. When she reached the door, she swung the cane into the
opening and then she entered. The staff person acted very
appropriately, allowing Linda to discover and resolve her error on
her own.
Once again I extended an offer to demonstrate, under sleep-shades,
the full cane technique used by blind persons. I told the staff
persons they had but to ask. No one asked to have the
demonstration.
While waiting for Linda in her home room I heard an instructor
outside the classroom repeat twice, to a sighted student, Please
keep your hands off the wall; we have art work on the walls!
Encouraging trailing walls in place of using the cane does not
facilitate mainstream efforts, but instead serves to enhance
differences between Linda and her peers. This subtle and
unnecessary allowance can have negative implications for both
Linda's self-concept and the expectations which peers have for
Linda.
The next significant event, related to this assessment, occurred
when it became time to go from Linda's home room to her mainstream
class. A staff person informed Linda that it was time to go to
Carousel (her mainstream classroom). Another student in the class
was looking at Linda's cane. The staff person, while retrieving the
cane from the lad, informed Linda they were running late and would
have to hurry. As she finished her statement the staff person hung
up the cane, took Linda's hand, and proceeded down the hall.
Approximately one quarter of the way to the mainstream classroom I
heard Linda ask for her cane. The staff person told her that they
were late and didn't have time for the cane. Linda's question
reflects the value she places on her cane. The response to the
question indicates the need for staff training regarding the
importance of cane usage in the development of self-confidence and
independence.
That failure to permit Linda to have her cane with her was a lost
opportunity to reinforce her independence. Indeed, after arriving
at the mainstream classroom, Linda needed to go from one location
in the room to another. The staff person told her to go on over.
Then, almost immediately she said, Take my hand, there are kids on
the floor. Again, this was another example of a lost opportunity to
teach Linda and her peers that blind people can do things by
themselves.
Next, the class members, including Linda, were asked to go outside
and get an egg carton which had been filled with dirt and planted.
Linda's assigned staff person accompanied her, helped her find a
carton, and lined up with her to come back into the building. They
had stopped just prior to the sidewalk while waiting for other
children to move inside. When the staff person indicated to Linda
that the line was moving, Linda moved forward, caught her toe on
the edge of the sidewalk, and almost fell. With the cane Linda
could have been in control of her own mobility and collected
information relevant to her needs. She might still have stumbled,
but then again, maybe not. Because she was not allowed to take her
cane to the mainstream class, she did not have it available for
recess or for the walk back to her home room.
Also, a different staff person led Linda back to home room by a
different route. This inconsistency in going to and from various
locations occurred several times and appeared to be the norm. It
would be helpful for the staff to learn the value of Linda's using
the same routes during this early period of learning how to
maintain orientation.
It is salient to the evaluation that Linda, when she used the cane
at school, exhibited none of the negative behaviors she had
displayed while at the mall on Sunday, May 9. Whatever the cause
for this improved respect for using the cane, the absence of
negative behavior simply means one less thing the staff at the
school would need to modify.
Also noteworthy is that, during the morning I observed Linda at
school, with the exception of one staff person, no one else
prompted her to use either the pre-cane device or the long white
cane. Instead the staff consistently took Linda's hand to accompany
her to various class activities.
It is significant to note that, while staff were reluctant to
expand their knowledge of the cane, I did observe a high level of
commitment and concern for Linda and a good deal of coordinated
effort in expanding her knowledge of geometric shapes and enhancing
various concepts in general. These efforts should contribute
significantly to Linda's development of spatial awareness and the
ability to generalize information when moving about with her cane.
SUMMARY OF FINDINGS
Linda demonstrated:
1. a willingness and motivation to use the cane;
2. awareness of the value of the cane as a tool to assist her in
her mobility;
3. awareness of sound feedback available from the metal cane tip
and ability to use same;
4. awareness of texture variables, as they relate to orientation
and mobility;
5. good echo/sound cue usage;
6. recognition that the cane can locate objects and openings
through purposeful extension of the cane in the desired direction;
7. a willingness to explore her environment with the cane;
8. a firm grip on the cane for extended periods of time;
9. excellent balance in a variety of evaluation environments;
10. an increased pace when using the cane as opposed to trailing
the walls; and
11. good travel orientation.
RECOMMENDATIONS
As a result of the evaluation, I make the following
recommendations:
1. Future instruction in orientation and mobility be conducted
using the long white cane.
2. The cane be used for all independent mobility as often as
possible in the school and in home life.
3. Staff, parents, and peers receive in-service training in basic
use of the cane by blind role model(s) and professional staff so
that they will be better able to reinforce the use of the cane in
and out of the school environment.
4. Establish set routes during this early phase of O & M
instruction for going to and from classrooms. This will allow Linda
to concentrate more on the skills associated with manipulation of
the cane and less on keeping oriented.
5. Some emphasis and priority be given to cane usage until Linda
develops more skills. For example, perhaps on Mondays and
Wednesdays Linda might use all of her allotted time just going to
and coming back from, say, physical education (or some other
class). Learning independent mobility is a priority on those days.
On Tuesdays and Thursdays Linda takes her cane, but may also take
a staff person's hand to quickly get to P.E. so she can
participate. On these days the emphasis is on class participation.
This approach is suggested as an interim solution, pending Linda's
development of speed and self-confidence in using the cane. Careful
consideration should be given in a plan of this nature to assure
minimum disruption of her academic curriculum.
Those were my findings but the school continued to resist the
Delkers' request for Linda to receive instruction in the use of the
long white cane. Indeed, the Douglas School District chose to
contest the payment of my services even though it is the right of
parents to seek outside evaluation in cases where the school and
parents disagree.
A Fair Hearing date was set for June 23, 1993, to be held in Rapid
City. The school district, represented by their legal counsel,
called upon a number of professional staff and the Regional O & M
consultant to testify. Mr. and Mrs. Delker, represented by South
Dakota Advocacy Services (thanks to the help and support of Karen
Mayry), called witnesses to support the need for the independent
evaluation. Among those testifying at the hearing on behalf of
Linda's training needs were Konnie Hoffman and myself.
Since this was to be the first time that I had to provide testimony
in a hearing, I chose to alleviate some of my apprehension by
staying outside the courtroom. Soon it was my turn to testify. The
questions posed by the counsel for the school district began on a
rather low-key level, asking about my background and seeking weak
links in my professional experience which would discredit me. Then
came a question which completely caught me off guard! The school's
counsel asked: Isn't it true that you first learned of this job
from Karen Mayry, the NFB's Rapid City representative? I answered
that I had learned of the Delkers' need from Karen and that she was
the State President of the Federation in South Dakota. He next
said: And isn't it also true that the NFB has referred jobs to you
on numerous other occasions? To which I answered: No, it is not
true. This is the first such referral! There was complete silence
in the courtroom! The counsel then asked, No other jobs at all? To
which I also answered, No! (When Karen contacted me in April of
1993, I was in the first full month of self-employment as a
consultant! And if it had been the 100th consulting job referred to
me by the NFB, what does that have to do with the appropriateness
of the evaluation? My Federation membership was not a surprise to
the school; it was listed on my resume!).
In July of 1993 the Hearing Officer handed down his ruling and
found in favor of Mr. and Mrs. Delker and ordered the Douglas
School District to reimburse the Delkers' for the cost of the
independent evaluation. The school district has since obtained the
regular services of an O & M instructor for Linda Perez, and she is
reported to be making fine progress in the use of the cane, using
it not only at home, but also in school!
It was a long road for Linda Perez and her parents, Mr. and Mrs.
Delker, a road they should not have had to travel! But since they
did experience the objections of the school, it was nice to have
the help of Karen Mayry and the many other Federationists who
subsequently provided advice, moral support, information for
resources, and perspective regarding blindness through articles
published in the Braille Monitor and Future Refections. There are
times when we simply can not go it alone.
Editor: The next segment is the complete, unedited text of the
hearing officer's decision in the Linda Perez case. It includes
references to pertinent segments of the law, history of the intent
of the law, and relevant court cases, as well as references to
arguments and evidence submitted by both parties in the case.
Many of you may be tempted to skip this segment, but I hope you
will not. There is much to be learned by reading these original
documents. The IEP and all the rights that parents have in that
process would be meaningless without the right to appeal and to
have that appeal heard before an impartial, qualified hearing
officer. But parents cannot effectively utilize this right if they
do not understand the process, or have a practical sense of what
they can reasonably expect to get out of it.
As in the Linda Perez case, hearing officers much prefer to deal
with procedural questions as opposed to educational instruction
issues (i.e. Did the Delkers have the right to reimbursement for an
independent evaluation? versus Should Linda Perez receive cane
travel instruction?). Even when the parents prevail, seldom will
the ruling mandate particular IEP goals. Rather, the ruling will
focus on the appropriateness, or inappropriateness, of the
evaluation(s) in question. The hearing officer will then order both
parties to go back to the drawing board and write another IEP, or,
even more fundamentally, order them to get another evaluation. If
parents have not understood and anticipated the limitations of due
process rulings, they may end up winning the battle but losing the
war.
Here, then, is the Conclusions of Law and the Decision portion of
the July 9, 1993, South Dakota Board of Education due process
ruling in the Douglas School District v. Mr. and Mrs. Dale Delker
case.
CONCLUSIONS OF LAW
1. The parties received due, proper and legal notice required in
contested cases.
2. The Hearing Officer has jurisdiction over the parties and the
subject matter of this action.
3. The Douglas School District has not met its burden of proving by
a preponderance of the evidence that the evaluation it provided for
Linda Perez was sufficiently appropriate to defeat the Delkers'
right to an independent educational evaluation.
4. The Delkers are entitled to reimbursement for the costs of
obtaining the independent educational evaluation of Linda Perez by
Douglas Boone.
5. The Hearing Officer makes such other and further conclusions of
law as are contained in the written Decision, filed herewith.
DECISION
The Decision of the Hearing Officer is that the independent
educational evaluation obtained by the Delkers was consistent with
their rights pursuant to the South Dakota Special Education laws,
the Education for All Handicapped Children Act of 1975 and its
implementing regulations. Thus, the Delkers are entitled to
reimbursement for the cost of this independent evaluation.
Additionally, the school needs to take the Boone evaluation into
account in determining Linda Perez's independent educational
program as it relates to cane use. The decision whether Linda is
ready for cane use and training should be made in the first
instance by the placement committee and parents, taking into
account all information about Linda, including, but not limited to,
the Mundschenk evaluation, the Boone evaluation, Linda's current
use of both the pre-cane device and the cane, the family's support
or non-support of either plan, and such other factors that may be
relevant in determining an appropriate and beneficial IEP for
Linda.
As pointed out by the school, the landmark case in special
education was Board of Education, Etc. v. Rowley, 458 U.S. 176
(1982). There is a two-part test to be applied in these cases: (1)
whether the procedural requirements of the Education for All
Handicapped Children Act of 1975 (the Act) have been followed; and
(2) whether the individualized educational program (IEP) developed
through the Act's procedures is reasonably calculated to enable the
child to receive educational benefits.
The school argues that there is no issue about the procedure used,
but that the only issue is the substance of Linda's educational
program. This argument is incorrect. The case is before the Hearing
Officer on a procedural issue raised by the school itself, namely,
whether its evaluation of Linda was appropriate so as to defeat the
procedural right granted to the Delkers by the Act for an
independent educational evaluation pursuant to 20 U.S.C.
14l5(b)(1)(A) and 34 C.F.R. 300.503(b).
If the case at bar had been a challenge to the educational program
provided by the school for Linda, then Rowley would undoubtedly
control and require that the school's plan be found to be
appropriate. The school is to be commended for developing an
excellent overall educational plan for Linda. It is clear that
Linda has benefited from the implementation of the IEPs that were
developed for her. As Linda's teachers noted, Linda has progressed
remarkably, and she enjoys school a great deal.
The issue, however, is whether the school properly refused the
Delkers' request for an independent educational evaluation for
Linda regarding her readiness to learn cane skills. Linda had been
given an initial comprehensive evaluation in October 1991. Between
October of 1991 and the fall of 1992 Linda changed considerably.
She was not functioning at the same level as a year earlier.
Linda's teachers stated that her skills had grown and improved
beyond all prior expectation. According to the end of the year
report from the Student Resource Room, since the evaluation was
completed [October 1991] Linda has made wonderful progress.Linda
has amazed us and has gone beyond any expectations. (Emphasis
added). Thus, by the fall of 1992 the conclusions from the October
1991 evaluation about Linda's skill levels and developmental age
were no longer accurate.
The October 1992 re-evaluation was necessary because of the changes
in Linda's circumstances. ARSD 24:05:25:06 provides that
Re-evaluations shall be conducted every three years or more
frequently if conditions warrant or if the child's parent or
teacher requests an evaluation In this case, the changes in Linda's
abilities, as identified by Linda's teachers and her parents,
warranted the re-evaluation, which was conducted by Jane Mundschenk
in October 1992. Additionally, Mrs. Delker had specifically
requested this re-evaluation for the purpose of determining Linda's
cane readiness, due to Linda's apparently successful experiences
with a cane since the 1991 evaluation.
Several important considerations that merited the October 1992
re-evaluation, then, were as follows: (1) Linda had changed and
grown considerably in her performance levels over the last year;
(2) Linda had received cane instruction from Konnie Hoffman for
several weeks, and had gained considerable skills in her ability to
use a cane since 1991; (3) Linda was using a cane regularly at
home; (4) Linda could not use her pre-cane at home because of
environmental considerations; (5) Linda's family had become strong
supporters of, and advocates for, cane use and training instead of
pre-cane use; and (6) Linda's guardian, Mrs. Delker, specifically
requested an evaluation of Linda's ability to use a cane.
The school was not able to prove the appropriateness of its
evaluation conducted in October 1992, because the evaluation did
not address these considerations. For example, Ms. Mundschenk
stated that she relied on the stale October 1991 findings regarding
Linda's performance level age for Linda's abilities; there was no
re-assessment of whether and how much Linda's performance levels
had actually changed over the last 12 months. Ms. Mundschenk denied
any knowledge of the training that Linda had received from Konnie
Hoffman. Ms. Mundschenk did not consider Linda's use of a cane at
home, nor the environmental limitations for pre-cane use. Ms.
Mundschenk did not take into account the attitude and potential
supportiveness of Linda's family regarding cane use or pre-cane
use.
Although the written criteria used by Ms. Mundschenk for her
evaluation appeared to require inquiry and observation of the
child's use of a cane, Ms. Mundschenk's October 1992 report, stated
that she did not assess Linda's use of a cane. In a letter dated
May 22, 1993, Ms. Dunmire offered the school's explanation why Ms.
Mundschenk did not test Linda's use of cane: A cane was not used at
the time of the assessment as the examiner felt it was
inappropriate for Linda at the time, for various reasons. The
report of the examiner, Ms. Mundschenk, stated, however, that
Linda's ability to use a cane would have also been assessed, but it
was not available. Ms. Mundschenk also testified that she had not
received documentation from the school about Linda's use of a cane.
Thus, on its face, the October 1992, evaluation did not appear to
evaluate the changes in circumstances that Mrs. Delker believed
demonstrated Linda's cane readiness. Moreover, Ms. Mundschenk
relied upon conclusions regarding Linda's skill levels that were a
full year out of date. It is true that in October 1991, Linda was
reported to have skill levels of a two- or three-year-old. By
October 1992, however, these skills appear to have grown
considerably according to the reports of Linda's teachers. Yet,
there was no new information provided to Ms. Mundschenk on these
critical points.
Finally, the methodology used by Ms. Mundschenk appeared to be
somewhat summary and rushed. Ms. Mundschenk stated she spent
approximately one and a half hours observing Linda in her school
environment and without use of a cane. It is true that she stated
this methodology was accepted in the field, yet, when contrasted
with Mr. Boone's method of spending eight hours over a two-day
period studying Linda in a variety of settings (home, school, and
public mall), all with Linda actually using a cane, it would seem
that Ms. Mundschenk's method may have missed important information
about Linda.
The right of a parent to obtain an independent educational
evaluation when the parent disagrees with the evaluation obtained
by the school appears to be a significant and compelling right. 20
U.S.C. 1415(b)(1)(A) identifies certain required procedures,
which include an opportunity for the parents or guardian of a child
with a disability to obtain an independent educational evaluation
of the child. One important concern of Congress in enacting this
protection appears to have been to assure that all relevant
information ought to be considered by a school in developing an IEP
to avoid erroneous classification of children or their conditions.
For example, Senate Report No. 94-168, explains some of the
background to the procedural protections under the Act:
The Committee specifically requires that procedural safeguards
guaranteed to parents provide adequate protection against erroneous
classification.
The Committee is alarmed about the abuses which occur in the
testing and evaluation of children, and is concerned that expertise
in the proper use of testing and evaluation procedures falls far
short of the prolific use and development of testing and evaluation
tools.
All relevant information with regard to the functional abilities of
the child should be utilized in the placement determination.
Senate Report No. 94-168, at p. 29, 2 U.S Code & Cong. News, 94th
Cong., 1st Sess 1975 at p. 1452-53. (Emphasis supplied).
Congress intended to assure that if a mistake was made, it should
be made in obtaining too much, not too little, information for
placement decisions.
The federal regulations provide:
Parent right to evaluation at public expense. A parent has the
right to an independent educational evaluation at public expense if
the parent disagrees with an evaluation obtained by the public
agency. However, the public agency may initiate a hearing under
300.506 of this subpart to show that its evaluation is appropriate.
If the final decision is that the evaluation is appropriate, the
parent still has the right to an independent educational
evaluation, but not at public expense.
Parent initiated evaluations. If the parent obtains an independent
educational evaluation at private expense, the results of the
evaluation:(1) Must be considered by the public agency in any
decision made with respect to the provision of a free appropriate
public education to the child, and (2) May be presented as evidence
at a hearing under this subpart.
34 C.F.R. 300.503(b) and (c).
These regulations implement the procedural requirement of providing
for an independent educational evaluation. It is important to note
that the regulations also require that the school take into account
the results of any independent evaluation, even if the school's
evaluations were fully appropriate. Here, however, the school did
not mention or consider the Boone evaluation during the May 17,
1993, IEP meeting. Moreover, the school did not try to establish a
goal for Linda at this meeting because of the pending due process
hearing.
The school's action in delaying a decision on Linda's IEP until the
due process hearing was not appropriate under the regulations. The
school should have taken into account the Boone evaluation and its
conclusions, and, in conjunction with all other relevant
information then available, proposed an IEP for Linda. The
determination whether the Boone evaluation should have been at
public expense had no bearing on Linda's IEP. The purpose of the
due process hearing is never to order a school to follow any
particular IEP, but is instead to determine whether the school's
IEP, and procedures used to develop the IEP, are consistent with
the requirements of federal and state law.
It is premature for the parents to request that the Hearing Officer
decide whether Linda is ready to be trained in cane travel. The
school and the parents must first together make this decision at an
IEP meeting, taking into account all available information and
coming to a decision. If the parents challenge the IEP, or the
procedures used to develop it, then upon hearing, the IEP can be
assessed pursuant to the requirements of the Act as construed by
Board of Education, Etc. v. Rowley, 458 U.S. 176 (1982), and other
relevant cases. At this time, however, the position of the school
that: The goal relative to independent mobility will be developed
after the due process hearing and the IEP adjusted accordingly
makes it impossible to determine whether its IEP will be consistent
with the Act.
The school suggests that a parent may not be reimbursed for an
independent educational evaluation if the evaluation is obtained
while the school's request for a due process hearing is pending.
This is incorrect, although the parents do take a risk in obtaining
the early evaluation. Burlington School Committee of the Town of
Burlington v. Department of Education, 471 U.S. 359 (1985). In
Hudson v. Wilson, 828 F.2d 1059 (4th Cir. 1987), the Court of
Appeals addressed a similar contention. The school argued that it
should not have to provide reimbursement for an independent
educational evaluation because the parents obtained it after the
school had requested its due process hearing. The Hudson court
rejected this argument.
In granting the Delkers' request for reimbursement, the Hearing
Officer has considered the submission by Mr. Boone of his billing.
There was no evidence submitted to indicate that this billing was
unreasonable or inappropriate. Therefore, the Delkers are entitled
to reimbursement of the full cost of the consultation as evidenced
by Parent's exhibit P-F.
In their brief, the parents have requested that the Hearing Officer
award them attorney's fees. In her letter of May 22, 1993, Ms.
Dunmire also requested information about attorney's fees. The
Hearing Officer has provided both parties with a copy of the
Handicapped Children's Protection Act of 1986. This should explain
the current law regarding the awarding of attorney's fees.
The Hearing Officer is without authority to make an attorney fee
award for the instant hearing. This was clarified in the
legislative history to the above enactment. According to the
committee report, The Committee intends that 5.415 will allow the
Court, but not the Hearing Officer, to award fees in administrative
proceedings. PL 99-372, 4 U.S Code & Cong. News, 99th Cong., 2nd
Sess 1986 at p. 1804. Therefore, the Hearing Officer is without
jurisdiction to rule on the parent's request for attorney's fees.
The Hearing Officer finds that the Douglas School District has done
an excellent job in developing Linda's educational program.
Testimony and written reports show that Linda's teachers and
Douglas personnel demonstrate a great deal of caring and dedication
to helping Linda obtain an excellent education. They are to be
commended for their efforts and their success. Likewise, Linda's
guardians have proved to be diligent and caring parents who offer
a great deal to the school. Their involvement and participation in
Linda's placement meetings and IEP development has provided very
valuable insight and information to school officials. It is truly
rewarding to see such actions by both parties.
These actions convince the Hearing Officer that neither the school
nor the parents are tied to some philosophy that does not take into
account Linda's particular needs. The Hearing Officer specifically
finds, and encourages both parties to recognize, that the school
and the parents have shown that they are concerned only with
Linda's individual well-being and proper development, not with some
abstract philosophical goal. Recognition of each other's good faith
and legitimate concerns should assist the parties in developing an
appropriate and beneficial IEP for Linda, that takes into account
all relevant information available.
Dated this 9th day of July, 1993. Mark Falk, Hearing Officer
PART-TIME AND SUMMER JOBS
By Doris M. Willoughby
Editor's Note: When my blind son began talking with his father and
me about getting a summer job, it occurred to me that this would be
a great topic for the Future Reflections Spring/Summer issue. As I
began reviewing past issues of the magazine to see what we had last
printed on the subject, I came upon the following article. When I
reread the article I was impressedþas I was when I first read it
twelve years agoþby the author's good sense and good advice. Yes,
twelve years ago. This article was published in the April, 1982,
Volume I, Number 3, issue of our magazineþexcept at that time the
publication was called the National Federation of the Blind
Newsletter for Parents of Blind Children. In any event, because the
information is as relevant today as it was then, and because most
of our readers would never have had the opportunity to read the
article, it seemed sensible to recycle it. I did, however, add one
item to it. Following the article are some descriptions
(compliments of Job Opportunities for the Blind) of current jobs
held by blind persons today.
Did you, as a child or teenager, gain valuable experience through
a summer or part-time job? Your blind son or daughter can do the
same.
I see four stages or levels through which a youngster passes in
moving toward adult responsibility on the job. Although all
youngsters move through this progression in one way or another, it
may be helpful to analyze this more carefully with a blind
youngster. The second step, especially, is often given very little
thought; but careful attention to experiences at this level can aid
greatly in proceeding to the third and fourth levels of
responsibility.
l. The child helps with chores in his own home, gradually taking on
more responsibility. He picks up his toys, cleans his room, washes
dishes, takes out the trash, helps care for younger siblings, etc.
2. The youngster works at a job outside his home while an adult is
present at all times for guidance as needed. Examples include:
working as a mother's helper to entertain children while the parent
is present but busy; assisting with simple jobs at a business;
doing house-cleaning or other chores for a neighbor, under close
direction; learning work skills under close supervision by a
teacher.
3. The youngster works independently at a job with some
responsibility. He may shovel snow; deliver newspapers; wash dishes
in a restaurant; baby-sit with one or two children, with an adult
on call in case of serious problems; assist in an office, etc.
4. The teenager or young adult holds a job with mature
responsibilities in the field of his or her choiceþfactory work,
teaching, engineering, secretarial work, or any other occupation.
As the boy or girl takes on more and more responsibility, in
general he/she also earns more and more money. By the third and
fourth stages, it is important to insist that the blind youngster
receive the same pay that anyone else would receive. Even at the
first level, it is very helpful if the child receives some payment
for certain jobs; he can begin to learn that successful work brings
the agreed-upon wages, while failure or omission results in no
wages. I am not suggesting that youngsters be paid for all home
chores; they also need to learn to carry their own weight of work
as family members. But it is very instructive to pay the child a
small wage for certain selected tasksþperhaps those that are
optional and/or the most difficult.
How can a job outside the home be found is these days when many
adults remain unemployed? Here are some suggestions.
School counselors, teachers of the blind, and the state agency for
the blind should help. There may even be school-sponsored
situations such as a school radio station, an office job, or a work
experience program (these are not only for the college-bound). A
word of caution, however: a sheltered workshop, even if it is
labeled as a workshop for the blind, should not be necessary unless
the person has some additional problem (such as mental retardation)
which would make this placement advisable even without the matter
of blindness.
There is no reason to exclude blind youngsters from the traditional
part-time jobs such as snow shoveling, baby-sitting, and newspaper
delivery.
Friends and relatives may offer a job or a job lead.
If your son or daughter is old enough, services from the regular
state employment agency should be used. If the employment counselor
suggests that the agency for the blind should be helping instead,
explain that you want services from both agencies.
Churches and other community groups often have an odd-job referral
service especially for teenagers. In our community there is one
called Rent-a-Kid.
Other young people may have leads. Another teenager may know of an
opening in the restaurant where he works; a busy baby-sitter may
refer surplus customers to your son or daughter who is just getting
started.
Blind businessmen usually are especially willing to give a young
blind person a chance, and to help him or her find job leads. The
National Federation of the Blind (NFB), particularly, will be glad
to try to help.
(The NFB coordinates, in conjunction with the United States
Department of Labor, a very successful project called Job
Opportunities for the Blind (JOB). This is a nationwide effort to
help blind people get the information and locate the resources
needed in order to become employable and to find jobs. Contact JOB
at 1800 Johnson Street, Baltimore, Maryland 21230, for information
on job-seeking, and for the name of a blind person near you.)
While recognizing the importance of earning money, it is valuable
to note the benefits that often come from volunteer work. For
example, my two sisters gained valuable experience during some of
their school years by working as candy stripers in a hospital.
After a time this volunteer job made them eligible for a nurse's
aide course which led to part-time paying jobs at the same
hospital. However, even without the matter of leading directly into
actual employment, the work as candy stripers was very valuable.
Marian became a physical therapist, and found the experience to be
of direct benefit in her education. Margery became a biologist; she
benefited from the general background of work experience. She also
worked at a volunteer job in the field of biology and found that
this, too, led to a summer job with pay. Moreover, both of my
sisters are also homemakers and find the hospital background
helpful in regard to home nursing techniques. Although my sisters
are sighted, that is not important here because blind young people
can and do have the same kinds of experiencesþeven to the details
of doing the very same jobs described here.
My husband, who is a blind electrical engineer, found that work at
the campus radio station helped prepare him for his career. Other
common examples of volunteer work include: selling Girl Scout
cookies, teaching Sunday School or other religious classes,
supporting a political party through campaigning or office work,
giving telephone Crisis Line assistance, and other community
service projects.
In most respects, all of this is the same effort that should be
made with a young sighted person. We must do the same kinds of
things with blind young people. We must consider in addition,
however, the greatest problem of blindness: public attitudes. Even
when your son or daughter is well qualified for a given job, the
employer's misconceptions may cause resistance toward hiring him or
her. Overcoming this is the most difficult problem of all, and many
materials have been published on this general subject by the NFB
and JOB. Here are some suggestions from the experience of blind
adults:
þThe young person must be well prepared to handle the job. Teachers
and counselors of the blind should help with techniques in personal
skills and personal grooming, as well as specific job skills such
as child care. In my book, A Resource Guide for Parents and
Educators of Blind Children, available from the National Federation
of the Blind, I have set down a number of suggestions, including a
detailed discussion of baby-sitting methods.
þThe young person should present a poised appearance and be ready
to explain confidently how various tasks will be accomplished. If
the employer does not bring up the subject of blindness, he/she
probably is nevertheless thinking about it; it is wise for the
applicant to bring it up and explain the methods that will be used.
At the same time, however, keep blindness in perspective as a
relatively minor factor; general qualifications for the position
are far more important.
þAlthough it is well to have an open discussion of blindness in a
face-to-face interview, it is usually best not to mention blindness
when calling or writing to ask for an interview. Too often the
employer's misconceptions will result in no interview at all, and
no real chance to explain about effective alternative methods. It
is no more necessary to mention blindness before the interview than
it is necessary to mention race, height, or other personal
characteristics.
þAs a parent, consider carefully the advantages and disadvantages
of your accompanying your son or daughter to a job interview. On
the one hand, some youngsters really need help in talking with
someone about a job. On the other hand, your presence implies that
the young person is not able to handle things aloneþafter all, if
he cannot even go to the interview alone, how could he take
responsibility for the job itself? In general, with an older boy or
girl we strongly discourage the parent's participation in a job
interview. A possible alternative, if help is really needed, is to
have a counselor or teacher participate rather than the parent.
Also note that if you are needed for transportation only, you can
and should stay away from the actual interviewþeven remaining
outside the building. Furthermore, consider very carefully whether
some other transportation is possible so that the young person can
show complete independence.
þIn regard to formal employment applications by the teenager or
young adult, become well-informed on civil rights laws and
regulations. Discrimination solely on the basis of blindness is
prohibited in many situations, and the National Federation of the
Blind is working to get such protection strengthened and broadened.
It is sometimes wise to mention judiciously to an employer that you
know he does not wish to discriminate.
Recently I was talking with some blind high school students about
part-time jobs and future plans. One young woman was describing how
she is interested in becoming a veterinarian and already has a
part-time job in a vet's office.
Last week I helped with an autopsy on a horse, she said. I had to
hold the heart.
Ugh! Was it still beating? asked someone.
Of course not, she answered; I said it was an autopsy.
Gross! exclaimed the others. How revolting!
Accompanying their expressions of dismay, however, was
well-understood humor showing admiration for the young blind woman
who has a responsible and difficult job while still in high school.
She will do well.
JOB OPPORTUNITIES FOR THE BLIND cosponsored by the National
Federation of the Blind and the U. S. Department of Labor
J.O.B. EMPLOYER'S BULLETIN 1994<R>A Positive Philosophy for Hiring
Blind Employees
Here are some of the jobs blind employees are doing right now
around the United States:
Yard-hand in a large lumberyard. He cuts wood, loads and unloads
trucks, and performs other jobs as needed. This is his first job
since becoming blind in his middle years. He used to drive a truck
and knew he did not want any kind of office job. He obtained
training in good alternative techniques of blindness, learned how
to talk about his abilities, and is very satisfied with his new
job. His boss is so satisfied with his new employee that he called
the job placement person (a JOB volunteer) to thank him for helping
to make the match.
Accountant for a state agency in Louisiana. While still a high
school student, she obtained advanced training in blindness skills
through attending a work-study summer program for blind teens.
After her recent graduation from a state college, she worked at job
hunting. In a few months and with no outside assistance, she was
hired for her first job as an adult.
General kitchen worker at a Wendy's. He makes hamburgers and french
fries and cleans tables. He has a high school education, but until
he attended a training center to increase his skills of blindness
he was unable to get a job.
Fast food counter worker at a Price Club, New York State. He
prepares frozen pizza dough for fillings, heats frozen large
pretzels, and boils and serves hot dogs to customers. In between he
refills condiment containers and keeps the area clean. He said he
convinced the boss to hire him by telling him about the meal for
forty people that he planned, bought goods for, cooked, and served.
The meal was a graduation exercise at an innovative training
program he attended after years of frustration with state-sponsored
training centers for orientation to blindness. This job pays the
most money that he has ever earned, and he treats his job as a
precious gift.
Teacher of second, third, and fourth grades. Totally blind, she has
a wonderfully active method by which she teaches handwriting to her
students. They love her teaching style because it gets them
involved in learning. Their parents love to see their children
enjoy being students.
Legislative page in the South Carolina legislature. For several
years Senator Warren K. Giese observed Mr. D. coming to the state
house and effectively educating members of the General Assembly on
issues important to a well-known state-wide consumer group. Then he
observed Mr. D. participating as a fellow speaker on a panel
concerning a new Braille literacy law. At that time, Senator Giese
extended the invitation and honor of becoming a legislative page.
After fulfilling his duties as a page, Mr. D. intends to work
toward a law degree.
Salesman of electronic goods for a Sears store in Missouri. He had
formerly worked for another retailer in their electronic department
but prefers the rules under which Sears compensates their top
salesmen. His customers appreciate his thorough knowledge of
electronic devices and his ability to speak in terms that laymen
understand.
Head of a new department in a free-lance company that provides
medical transcription (MT) to a large number of clients. She is in
her forties, has been blind all her life, is married and the mother
of one pre-teen boy. She is so very competent in office skills that
the company recruited her away from her former job as a teacher of
independent living skills for that state's agency for the blind.
They know her abilities because she took the state job after having
worked two years for them as a medical transcriptionist. In her new
job she will recruit other blind medical transcriptionists, train
them in company procedures, when necessary upgrade their skills in
medical vocabulary, and move them on to the company's general MT
corps once their work is up to company standards. For the first
part of her job, she is ordering adaptive computer equipment that
she knows will work well.
In lives such as these, we see demonstrated the truth in these
words from America's foremost philosopher on blindness:
The real problem of blindness is not the loss of eyesight. The real
problem is the misunderstanding and lack of information which
exist. If a blind person has proper training and opportunity,
blindness can be reduced to the level of a physical nuisance.
þ Dr. Kenneth Jernigan
GOING CAMPING
by Gail Katona
Editor's note: Mrs. Gail Katona was the 1993 recipient of the
National Federation of the Blind's Distinguished Educator of Blind
Children Award.
In Albuquerque, New Mexico, the education of blind students at Zia
Elementary oftentimes goes beyond the classroom. Education is more
than learning how to read and write; education is also providing
students with real-life, everyday experiences. This is especially
true for blind children. Sometimes people think that blind kids
can't, or shouldn't, do what other kids their age are doing. We
know this is not true. As teachers and parents it is up to us to
help our children be regular kids and to provide them with the
ordinary experiences of childhood.
For the past three years the teaching staff for the visually
impaired at Zia Elementary has talked about taking the class on a
camping trip. This year we made it a reality. We began planning the
trip by setting a date for May 21-23, 1993. Rye Gerry, one of the
teachers, and George Binder, our O&M instructor, masterminded the
trip. (IþGail Katonaþam not much of a camper, so I provided moral
support.) We spent weeks figuring out what was needed: how many
tents, sleeping bags, how much and what kind of food, how we would
get there, who was coming, and so forth. It was our original
intention to take all thirteen students with just a few extra
adults to help out. However, as the time of the trip drew closer,
we had entire families wanting to come along. Well, the more the
merrier! We ended up having thirty-nine people spending at least
one night in the mountains with us. Our local NFB Parents of Blind
Children Division group paid for all the food and individual
families pitched in with supplies.
On Friday, May 21, 1993, we spent most of the school day getting
ready for the trip; packing food, making muffins, cutting veggies,
and learning how to put up a tent (after, that is, first
discovering just what a tent is and what it looks like!). After
school we loaded four pick-up trucks and one car with all of the
gear and the kids. We were off to the Pecos Mountains in northern
New Mexico!
We had reserved a beautiful group campsite so we knew we had plenty
of room to pitch tents. As soon as we arrived, the sky opened up
and it started to rain. We scrambled to unload and threw everything
(including the kids) under the pavilion to stay dry. We knew as
soon as the sun set it would be very cold, soþrain or no rainþwe
proceeded to get the tents up. After the tents were up, the kids
eventually found all of their gear. We had hot dogs for dinner and
everyone settled in for the night.
We woke up early in the morning to find ice on the inside of all of
our tents. No wonder I froze during the night! After a breakfast of
pancakes, sausage, and cereal, the kids were allowed to roam wild
and explore. Each child had a whistle around his or her neck in
case he or she got into trouble and needed to call for help.
Everyone was also required to always travel with a buddy. With all
of the adults we had it was easy to keep an eye on everyone.
Over the next two days the kids raced around the wilderness, went
on hikes, tried fishing, went wading in the frigid stream, roasted
marshmallows, gathered firewood, sang campfire songs, (under the
pavilion because it rained again), got really dirty, and had a
wonderful time. It's a good thing Armando's family brought a large
tent (and figured out how to pitch it), because it was always full
of kids. We were definitely a tired bunch of campers by the time we
got back to Albuquerque Sunday afternoon.
There were a number of incidents of note. First of all, no one fell
in the creek! Rye had to hero- ically jump in to rescue Francine's
cane as it floated away, but that doesn't count. Michael would get
the award for finding and immersing himself in the largest quantity
of mud. Henry Ray should be commended for his good judgment in
pitching head-first into everything except the campfire. Valene
single-handedly attracted a variety of clack-chinned hummingbirds
to our camp with her bejeweled cap. Nick decided he likes muffins
after all. Darren and Michelle should get an award for achieving
the farthest distance from their shoes. Louise proved herself to be
the most accomplished fisherwomanþshe caught three trout. Jennifer
should have the award for sleeping the latest, and George for going
to bed the earliest. Debbie and Brent demonstrated that they were
the most courageous and determined by washing their hair in the
unheated mountain water. Elisha's cane technique on the path to the
restroom was outstanding! Chris was the most enthusiastic
participant in B-I-N-G-O. Lonnie was the most accomplished sleeper
in a cramped space. Mike Momola is invited on any and all camping
trips because anyone who shows up with a full coffee pot at 6 a.m.
is indispensable! Fail would get the mind-over-body awardþshe was
up (and functioning) before 6:30 a.m. both days! Doug is to be
commended for outstanding cane technique when crossing a stream.
Flora had a sense of humor even at 7:00 a.m. on a thirty-degree
morning. Darren learned not to put his sleeping bag on a slope (he
kept sliding out the top). Kevin sustained no injury when he fell
off his air mattress. And finally, Geronimo must have had the most
fun of all. When Rye dropped him and Doug off at home on Sunday
afternoon, he got back in the car five times asking to go back!
We plan to make the camping trip a yearly tradition because we had
such a fun weekend. There were certainly some glitches in the
organizational process, but that was to be expected for the first
time out. We will be taking notes and keeping a camping trip file
so that we will be better prepared next year.
It was so rewarding to see all the kidsþblind and sightedþcharging
off together to explore. The only way you could tell them apart was
by the white canes. And that's the way it should be: no difference
in expectations, no difference in activitiesþjust the difference of
the alternative techniques needed for achieving and having fun,
too!
AN AVERAGE AMERICAN
by Nancy Martin
From the Editor: The average blind person is able to perform the
average job in the average career or calling, provided he or she is
given training and opportunity. This is one variation of a phrase
commonly used by the National Federation of the Blind to describe
our philosophy about blindness. Possibly the one part of that credo
that arouses the most skepticism among members of the
publicþincluding parents of blind children and the blind
themselvesþis the part about the average person. Can the truly
average blind person really have a complete, full, normal, and
successful life? Nancy Martin believesþno, she knowsþit's true!
Here are the remarks Mrs. Martin delivered this past winter to a
seminar for parents sponsored by the National Federation of the
Blind of Washington:
Most blind people who are presented as role models are exceptional
and highly accomplished people such as lawyers, physicists, or
entertainment stars. I have been asked to give a talk because I
represent the average American blind person. I am not a rocket
scientist. I am a housewife.
I got off to a slow start as a kid. Born three months prematurely
I did not walk until the age of three, was not potty trained until
the age of four, was in kindergarten for three years, and started
first grade at the age of eight. While my slow development was no
doubt discouraging for my parents, I eventually picked up steam and
took off.
Today, I am looking for work as a trained medical transcriptionist.
I am an amateur musician on several instruments and play all types
of music from classical piano to old-time folk music. I am an
officer in my Federation chapter. I love to go canoeing and
backpacking with my husband, and I am currently helping a blind
person develop mobility skills.
The point of my story is that even without support groups my
parents were able to get me through a difficult childhood. So don't
be discouraged with your kids. My parents were lucky to get support
from other family members. For example, my grandfather took me for
nature walks, showed me the local train yards, and exposed me to
other stimulating experiences. He even had a policeman friend of
his lock me in a jail cell so I could see what it was like. He got
me over my fear of electric lawn mowers with their spitting grass
and noise.
When I was a resident at the school for a while, Mrs. Woodworth was
one of the house parents in the girls' dorm. She loved us and
hugged us and filled in for mom. She exposed us to farm animals,
took us to the zoo, and gave us the hands-on experiences that are
so important to blind children.
Now, in 1994, thanks to groups like the National Federation of the
Blind and the National Organization of Parents of Blind Children,
children and their parents have role models and much more support
available. I want to use my membership in the NFB to help other
blind people and parents of blind children realize that you don't
have to walk on the moon to live a full and productive life. It is
respectable to be blind.
DISCRIMINATORY STANDARDS<R>FOR THE BLIND IN<R>STANDARDIZED TESTING
by Scott LaBarre
Editor's Note: Mr. Scott LaBarre is the former President of the
National Association of Blind Students. Although no longer in
school (he just completed a year of advocacy work at the National
Center for the Blind and is now looking for employment in a private
law firm), the issue of discrimination in standardized testing
continues to be of grave concern to him, as it should be for all
blind persons.
At the birth of the National Federation of the Blind only a handful
of blind persons had the opportunity to attend our nation's
colleges and universities. Most of our society, blind and sighted
alike, believed that pursuing advanced degrees in an integrated
setting was beyond the capacity of the blind. Just as the existence
of blind people on college campuses was rare, so was the plethora
of entrance and certification examinations which exist today. As
the number of persons going onto higher education has increased,
our country has developed and invented new ways to distinguish
between the millions of people who go to college, law school,
graduate school, and other institutions each year. Consequently the
development and administration of entrance examinations has
blossomed into a major industry.
As blind persons emerge from second-class status to first-class
citizenship we strengthen our demand to equal opportunity and a
level playing field. Such is the current situation we face in the
area of standardized testing. Although we have grappled with these
issues for over twenty years, I believe that we now stand at a
crucial turning point. Therefore, we must formulate our policy
carefully and firmly respond to the challenges we face.
Before going any further in this article, it is helpful for us to
understand the basic structure of standardized tests in our
country. In this field there is essentially one major player. That
major player is the Educational Testing Service (ETS) located in
Princeton, New Jersey. ETS essentially sets all the standards in
the administration and development of standardized tests in our
country. It is true that there are independent organizations such
as the ACT and the organization which administers the Law School
Admissions Test (LSAT), but these organizations emulate the
procedures and practices adopted by ETS.
In 1990 Congress passed the Americans With Disabilities Act (ADA),
and that Act brings squarely under its coverage the administration
of examinations. Section 309 of the ADA mandates that all
examinations must be accessible to individuals with disabilities
and offered in a non-discriminatory manner. As a result of the
passage of the ADA many disabled persons have now begun to
challenge policies and procedures adopted by ETS and others.
There are two main reasons why standardized testing has become such
a hot issue. First of all, ETS and others have adopted a wealth of
new policies as a direct response to the ADA. As usual, these new
policies have often been developed with very little meaningful
input from the individuals affected by them.
The second main reason stems from the fact that testing services
try to lump all disabilities into one group. This kind of policy
ignores the fact that different disabilities require different
accommodations. For example, persons with learning disabilities
often face a whole variety of barriers which we do not. For us the
greatest barrier is turning the printed word into a medium that we
can read for ourselves. This can easily be accomplished through the
use of Braille, a competent reader, large print, or recorded text.
Once we have our exam in an accessible format, the way we take the
test is little different than the way sighted persons take the
test.
The emergence of all these new procedures and policies has now
created some serious discord in the disability community. A recent
version of these procedures and policies adopted by ETS resulted in
a lawsuit being filed in federal court.
Jaclyn Okin is a student in New York who has Cerebral Palsy. She
had planned on taking the Scholastic Aptitude Test (SAT) during the
spring of this year. ETS and the College Entrance Examination Board
(hereafter referred to as the College Board) have designed a new
version of the SAT which they now call the SAT I. This new version
is radically different from the old SAT. For example, the SAT I has
more sections than the old, and the new sections assess different
areas of a student's verbal and mathematical abilities. Another
radical departure from the old SAT is that students are now
permitted to use calculators on the mathematics portion of the
exam.
When Ms. Okin applied to take the SAT I, she requested reasonable
accommodations. ETS informed Ms. Okin that if she wanted to sit for
the new version of the SAT, she would have to take the exam on the
nationally scheduled test date of March 23, even though there were
several other national dates scheduled. If a disabled student
wanted to take the exam on any other date, that student would be
administered the old version of the SAT. ETS claimed that the old
version is in fact very similar to the new SAT I and therefore
non-prejudicial to those who took it. Such an assertion by ETS is
ludicrous when one considers that the new SAT contains entirely
different sections and tests different skills.
Ms. Okin felt that ETS's policy was discriminatory. As a result,
she filed a lawsuit in the United States District Court for the
District of Southern New York alleging that ETS's policy violated
the ADA. Simultaneously many other disabled students filed
complaints of discrimination under the ADA with the Civil Rights
Division of the United States Department of Justice. The Department
of Justice became very involved in this matter and negotiated a
settlement agreement by the end of March.
In the settlement agreement, the Department of Justice states its
belief that ETS and the College Board violated the Americans with
Disabilities Act. The agreement also mandates that ETS and the
College Board offer the SAT I to any student with a disability on
any regularly scheduled national testing date. With respect to the
blind, the agreement states that the blind or visually impaired
will be allowed to take the SAT I either in large print or with a
reader. The agreement specifically relieves ETS and the College
Board from offering the exam in Braille or on recorded text until
the fall of this year. At that point, the exam must be offered in
Braille or on recorded text if so requested by a blind or visually
impaired student.
As you can see, the settlement agreement is a mixed blessing for
blind students. It is comforting to know that we can take the new
version of the SAT whenever it is scheduled for all other students.
However, we have to wait until this fall if we desire to take the
exam in Braille or recorded text.
An attorney at the Department of Justice informed me that ETS
claimed that it could not produce the exam in Braille or on
recorded text in a timely fashion for this spring's administrations
of the exam. Sadly the Department of Justice believed ETS when it
made this claim. With today's Braille translation software and
hardware it is very easy to produce exams and other documents in
Braille in a very short period of time. Additionally, it is not
very difficult to read an exam on tape. There are several
organizations which can either produce the exam in Braille or
record it on tape very efficiently and quickly. In light of the
foregoing reasons, it seems that the Department of Justice let ETS
and the College Board off the hook far too easily.
Unfortunately the settlement agreement was struck so quickly that
we had very little opportunity to influence it. If we would have
been a party to the process, I am certain that we would have fought
hard for the inclusion of Braille and recorded text in it. At least
the Department of Justice had the wisdom to ensure that Braille and
recorded texts of the exam shall be administered this fall. In the
future, however, we must continue to be vigilant and work hard to
ensure that Braille and recorded texts will be available to blind
and visually impaired test takers.
After we reviewed the settlement agreement, we realized that it
raised many more questions than it settled. Attached to the
agreement is a copy of a document called SAT Services for Students
with Disabilities: Information for Counselors and Admission
Officers. This document reveals ETS's current policy for students
with disabilities. Many of its provisions are problematic.
In the past, if a blind person wanted reasonable accommodations on
an exam, the blind student could prove blindness through a doctor's
letter. Once blindness was established, the blind student could
choose whatever accommodation that seemed appropriate for the
particular exam.
Under current policy a blind student must prove that he or she has
an individualized education program (IEP) on file with the school
or provide documentation from two authorized professionals
reflecting the blind student's need for special accommodations. The
handbook states as follows: To be eligible for tests administered
through SAT services for students with disabilities, students must
currently be receiving the same accommodations for assessment in
school that they will be receiving on the SAT program test. In
addition, students must have on file at their school either a
current IEP or two signed documents obtained from any of the
following licensed or certified specialists appropriate for
evaluating the disability: physicians, psychologists, child study
teams, or learning disability specialists.
In other words, we not only have to prove that we are blind, but we
must also prove that the accommodation we choose is appropriate to
our individualized situation. Our own experience about which
accommodations work best for us will no longer matter. A
professional or professionals will have to document that certain
accommodations are indeed appropriate for our situation. This
policy has the potential of stripping blind students of flexibility
and choice.
One can imagine several scenarios where the requested accommodation
and the existing IEP could be at odds. For example, a student's IEP
may state that Braille is the primary reading format which a
student uses, but on the exam, a student may request that certain
diagrams be provided in large print so that the student can use
residual vision to understand the diagrams visually. In such a
scenario, ETS could argue that since the IEP makes no mention of
large print for that student, it is under no obligation to provide
any materials in large print.
It is also possible to imagine a situation where a student would
not have an IEP. Some blind students have adjusted to their
blindness and no longer receive special education services. In such
a case, the blind student would be forced to have two documents
signed by professionals stating that the student would be using a
given accommodation or accommodations. It is often impossible for
physicians and other professionals to state with clarity and
accuracy the accommodations a given student may use. These
professionals usually do not have the day-to-day contact with the
student or a comprehensive knowledge of the alternative techniques
of blindness, and such a lack of contact and knowledge renders the
opinion of these professionals almost meaningless. ETS's policy
ignores the fact that the expert on which accommodations are most
appropriate in various situations is the student him- or herself.
Whether a student provides a copy of the IEP or a document signed
by a physician, psychologist, or child study team, the ETS policy
strips the power of choice away from the student. (ETS also lists
learning specialists among those who may certify a student's
accommodation. Obviously, this is NOT appropriate for blind or
visually impaired students. This is yet another example of how ETS
lumps all disabilities together.) The policy also fosters
dependence on the part of the blind student. Under such a policy,
the professionalsþnot the studentþare responsible for determining
which accommodations are most appropriate. By the time of high
school or college, blind students should be responsible for making
their own decisions about which methods and techniques work most
effectively for them.
In 1990 I graduated from St. John's University, and in 1993 I
graduated from the University of Minnesota Law School. Neither St.
John's or the University of Minnesota required me to prove that
using readers, recorded texts, and Braille were appropriate to my
situation. Once these schools had proof of my blindness, all
decisions relevant to which accommodations I would employ in given
settings were left entirely up to me. The bottom line was that I
complete the work. How I did so did not matter.
We have faced this same struggle in our dealings with college
campus disabled student service offices. Some universities have
required that we deal with disabled student service offices rather
than directly communicating with our professors about which
alternative techniques are appropriate for a particular class. In
these situations, it is the disabled student service office which
becomes the expert on our blindness. For example, we only get
Brailled exams if the disabled student service office believes that
we should get Brailled exams.
ETS's policy with regard to eligibility for alternative
accommodations is discriminatory and takes the power away from
usþblind students. We must respond to this situation as rapidly and
as firmly as we can. The Americans with Disabilities Act and
current thought about disability promote independence and
self-determination. ETS's eligibility policy strays far from this
laudable goal.
The handbook for counselors and admissions officials also contains
a section on Interpreting Scores from Non-standard Administrations.
As some of you may know, ETS and other testing agencies consider an
administration of a test as non-standard if a student takes the
exam in any way different from a non-disabled student. By their
definition, if you do not take the exam in print and under the same
time constraints while sitting in a room with hundreds of other
students, such an administration is non-standard.
ETS has always made the claim that if a student does not take an
exam under standard conditions, then it is impossible to prove with
mathematical certainty that the score derived from a test given
under non-standard conditions means the same as one administered
under standard conditions. Therefore, if a student happens to use
a reader or to take the exam in Braille, ETS will send a letter
with the test score stating that the exam was given under
non-standard conditions and that ETS cannot predict the accuracy of
the student's score in comparison with scores achieved under
standard conditions. This practice has often been called flagging.
With respect to blindness, the most controversial issue has been
whether it is appropriate for blind students to take additional
time to complete the exam. If additional time is appropriate, how
much additional time should be granted? Over the last few years,
ETS undertook a research project to answer these questions.
According to ETS's research, more time is appropriate for blind and
visually impaired students. ETS has also determined that
time-and-a-half is the appropriate measure of extra time. In other
words, if a sighted student has three hours to complete the exam,
a blind student should receive up to four-and-a-half hours for that
exam. One might legitimately argue that this conclusion is far too
generalized and does not distinguish between accommodations used
(Braille, large print, tape, and/or readers), and the student's
skill level and experience with the selected accommodation or
accommodations. Nevertheless, for the purposes of discussing the
flagging practice, let us assume that the ETS research finding on
extra time is accurate and appropriate.
Despite ETS's findings, they are still flagging our test scores. On
the one hand, ETS claims that there are so many differences among
students with various disabilities that they cannot accurately
predict the meaning of scores from non-standard administrations.
ETS further claims that the number of non-standard administrations
is relatively low that accurate comparisons between disabled and
non-disabled students' scores cannot be made.
On the other hand, ETS also claims that scores achieved under
non-standard administrations are comparable to those achieved under
standard administrations. Here are ETS's own words:
Nevertheless, with minor exceptions, the results of a four-year
research effort of the College Board, the Educational Testing
Service, and the Graduate Record Examination indicated that test
scores were comparable measures of the cognitive ability of both
test takers with disabilities and test takers without disabilities
and that admission decisions were related to test scores and prior
grades in much the same manner for applicants with disabilities and
applicants without disabilities. (Emphasis added). The study
further pointed out that test scores achieved by blind students
were in fact comparable measures of ability and could be used to
predict the performance of blind students in college.
I have never seen a better example of double-talk! Applying a
baseball analogy to this situation, one could say that ETS is
covering all the bases. ETS claims that it cannot predict the
meaning of our scores as they relate to our ability in college, but
ETS is also saying in the same paragraph that our scores are a
comparable measure of cognitive ability. So which is it?
If the scores we achieve are truly comparable, then ETS should not
flag our test scores. Such a practice is blatantly discriminatory.
Recently I took the Maryland Bar Exam, and I am happy to say that
I passed it. I used a reader and wrote notes in Braille. In other
words, I took the exam under non-standard conditions. My license to
practice law, however, does not contain any statement which says
that I achieved my license under non-standard conditions. My
license to practice law means no more or no less than somebody
else's license. I have just as much a right to enter the courts of
Maryland and represent clients as anyone else who holds a license
to practice law.
We know from our experience that our test scores, our college
degrees, and our licenses to pursue professions are just as valid
as those achieved by the non-disabled. Therefore ETS's flagging
policy is discriminatory, and I believe that we can make a very
strong argument that it violates the Americans with Disabilities
Act. The policy of flagging our scores leads some college or
university admission officials to believe that our scores are not
comparable. It goes without saying that such a practice is
incredibly damaging to the blind.
There is one final issue which must be discussed in relation to
standardized testing and the blind. In the past, we have often
faced great difficulties in our attempt to receive the
accommodation most appropriate to our individual situation. Many of
us use Braille. Others of us find the use of readers to be most
appropriate. Others find recorded texts most effective, and yet
others prefer to use large print. Of all the formats, Braille has
been the hardest to receive. Testing agencies have often claimed
that it would be an undue hardship for them to produce a given exam
in Braille. Just this spring, we were witness to how easily the
Department of Justice bought ETS's argument that it could not
produce the SAT I in Braille for the spring administrations.
The passage of the ADA has made it clear that examinations like the
SAT must be accessible. The passage of our Braille literacy bills
has made it clear that Braille is the most important reading medium
to the blind and should be widely available. Therefore, it is
becoming increasingly difficult for ETS and others to argue that
they cannot provide an exam in a medium which is most appropriate
to our individual needs.
There is no doubt that our concerns about standardized testing are
receiving more attention than they ever have, but it is just as
clear that we still have a long road left to travel before we
achieve true equality in standardized testing. We must operate on
all fronts to resolve these issues. One blind student or parent of
a blind child fighting alone will not be able to secure a victory.
It will take our collective effort through the National Federation
of the Blind to get the job done. Given our history and our
increasing strength, I have no doubt that we will succeed.
Ultimately the standards which will apply to the blind in
standardized testing will be established by all of us, all of us in
the National Federation of the Blind.
Editor's Note: The National Organization of Parents of Blind
Children and the National Association of Blind Students want to
hear from blind and visually impaired high school students and
their parents concerning standardized testing and other
preparations for college. We want to hear about your experiences,
your concerns, and your questions. We will also share information
with you about selection of appropriate accommodations, rights and
responsibilities of students in the testing process, and other
matters related to preparation for college. Also, we will help you
get in touch with your nearest local or state NFB group of students
and/or parents.
The president of the National Organization of Parents of Blind
Children is Barbara Cheadle of Baltimore, Maryland, and the
president of the National Association of Blind Students is Olegario
Cantos of California. Parents and/or students should write or
call:
Mrs. Barbara Cheadle, President National Organization of Parents of
Blind Children 1800 Johnson Street Baltimore, Maryland 21230 office
(410) 659-9314 home (410) 747-3472
Calls and letters from teachers of the blind and visually impaired,
rehabilitation counselors, and high school counselors will also be
welcomed.
OUR HOPE FOR THE FUTURE
by Dawn Neddo
From the Editor: KyleþDawn Neddo's sonþis blind. In every other way
Kyle is a typical boy. Two years ago, he was a typical
four-year-old, and today he is a typical six-year-old. But two
years ago, Kyle's education was not proceeding in a typical manner.
Unlike his sighted peers, no one was showing Kyle the letters in
his name, or teaching him the alphabet, or showing him books that
he would soon learn to read. And Dawn Neddo was angry. She saw her
son as a competent child who could, with the proper education and
opportunity, hold his own with his sighted peers. But his teacherþa
professional certified to work with blind and visually impaired
childrenþapparently viewed all blind children (Kyle included) as
inherently limited and incapable of full participation.
A clash was inevitable. However, the odds didn't look too good for
the Neddos. After all, Kyle's teacher's attitude only reflected
what most people believe to be true about blindness, anyway. What
hope could Mrs. Neddo and her husband have about prevailing with
their radical notion thatþgiven the right toolsþblind children can
learn and accomplish on an equal footing with sighted children? But
there was hope, and it came in the form of the National Federation
of the Blind of Michigan and its caring and knowledgeable members.
Reprinted below are three items from which Dawn Neddo's story of
Our Hope for the Future unfolds. The first is a performance report
from a regular toddler program that was open to all toddlers in the
community. The Neddo's independently enrolled him in the program
and paid the fee just like other parents. The report demonstrates
how typical Kyle is in his development. The next item is a
narrative based on an open letter Dawn wrote and circulated to
local and state education officials in an attempt to get Braille
and other services for her son. The final item in the article is a
presentation Dawn Neddo made to the October, 1992, state convention
of the National Federation of the Blind of Michigan. It was, by the
way, at this convention that Dawn was elected to her current
position as President of the Parents of Blind Children Division of
the NFB of Michigan. Here are the three pieces which make up Our
Hope for the Future.
April 4, 1992
TASK Karate, Inc. Toddler Activity Class 1332 South Commerce Road
Walled Lake, MI 4839O
RE: Kyle Neddo's Performance In Program
To whom it may concern;
Kyle Neddo has participated in our Toddler Activity Class for more
than one year. This class encourages social skills, coordination,
motor skill development, and confidence to function in a group
without a parent present. There are approximately sixteen toddlers
in his class.
The following is my evaluation of Kyle's performance:
PARTICIPATION: Kyle participates in nearly every activity. He
sings, dances, runs, jumps, tumbles, stacks, plays tee ball, bowls,
walks on low balance beam, completes crafts, and much more. He
excels in memory games and basic tumbling. The only activities he
cannot do are obvious visual games such as color matching. However,
he happily accepts an alternate role such as handing out the
colored items to be matched.
SOCIAL SKILLS: Kyle is very happy to be in the company of his
peers. He treats all toddlers with respect and very patiently waits
his turn even though he cannot see exactly when that will be. The
other children are not at all distracted or concerned that he is
different. Kyle functions as a member of the group. He is
outstanding at comforting other children. We recently had a little
boy who did not feel well and cried for quite some time. While the
other children simply played around him, Kyle followed his voice,
approached him, held his hand, gently touched his face, hugged him,
kissed him on the cheek and said, You're o.k.
SELF CONFIDENCE: This is Kyle's strongest asset. He believes in
himself and his abilities. He knows when he needs additional
information (because he cannot see the details of what is obvious
to those with sight). He asks for help freely but does not like
constant assistance. He only wants a minimum of extra attention and
is very effective at communicating where those lines are drawn. He
asks what he needs to know, then clearly says Now let me do it
myself, and he does.
I have greatly enjoyed having Kyle in our program and am confident
that he will be successful in a preschool program. He has strong
support from his family and great confidence in himself.
Sincerely, Kelly Johannes Toddler Program Director
The following narrative is based upon the open letter Dawn wrote in
April, 1992, about the deficiencies in her son's educational
program:
We are now into our seventh month of school, and I am still very
frustrated and disappointed in the services my son Kyle Neddo has
been receiving from Oakland Schools, his teacher of the visually
impaired (VI teacher), and Walled Lake Special Services.
For three-and-a-half years now I have tried to be patient, but
Kyle's needs are not being met by Oakland Schools, and I am
concerned with the lack of response to my input about Kyle's
education.
When Kyle was a baby, I felt that the Early Intervention Program
would be the support and direction my husband and I needed in
raising Kyle. In fact it has been a source of frustration,
disappointment, and anxiety for us. I honestly cannot say what
benefit Kyle has had in having a VI teacher in the last
three-and-a-half years.
The VI teacher has chosen to work on developmental issues which I
am trained, willing, and able to work on myself. I have asked her
numerous times to be the VI consultant and only work on the areas
in which I am not trainedþsuch as Braille and Orientation and
Mobility instructionþ but she is still working on the developmental
areas.
Kyle should be doing the same things as other four-year-olds, only
in a different way. Things such as: 1. recognizing his first name
in Braille; 2. beginning to learn the alphabet (in Braille, of
course); 3. following a Braille line with his fingers; 4. getting
some hands-on experience with reading Braille; and 5. being shown
how the slate and stylus and Braille writer work.
When I ask about Braille, I am told that he isn't ready. But I'm
seeing signs that he has an interest, and it seems that we are just
wasting time repeating the same things week after week. His VI
teacher has never shown Kyle any Braille letters, let alone his own
name in Braille. Sighted four-year-old children can at least start
to recognize the first letters of their names. She has yet to put
his hands on a Braille book and show him how to follow a line of
Braille. If it were up to her, Kyle would not know about, much less
see or use, a slate and stylus and a Braille writer.
Throughout the year we could have used various equipment for Kyle's
education but were told by his VI teacher that she would not be
able to leave such items with us or that the items were on back
order. Such items include: 1. beeper ball (for a gym class in which
Kyle was enrolled); 2. a slate and stylus; 3. an abacus; 4.
age-appropriate toys which encourage tactile exploration; 5.
textured books (which she had told us were very useful and
important); and 6. a Braille label maker.
During this year's IEP meeting, I was belittled and intimidated by
special services director, Dennis Wisniski, when I mentioned the
possibility of enrolling my son in the regular Walled Lake
Preschool. I was also informed by Mr. Wisniski that he had offered
to me the visually impaired pre-school program, and they were not
obligated to offer any other services if I rejected the center
program.
As far as Orientation and Mobility (O&M) is concerned, I have
discouraged the lessons with his VI teacher because the lessons had
become repetitious and boring for Kyle and he was becoming fearful
of walking on his own after the lessons. But when I take Kyle on
our many outings, he always remembers his cane and loves using it.
He walks independently using verbal cues. He has walked in various
surroundings without problem or fear: from a quiet outdoor setting
to a crowd of adults and children at the circus.
I feel, as I stated in September to the IEP team, that a new
teacher with new ideas and a different approach and attitude is in
Kyle's best interest. We need a teacher able and willing to work on
Braille and be supportive and encouraging of Kyle's future. We need
someone willing to work with Walled Lake Schools and give input to
his preschool teacher so Kyle will not fall behind year after year
as happens to many blind children.
This was how Dawn Neddo felt about Kyle's educational program in
April, 1992. With some help from the NFB, Dawn had a little
different story to tell when she gave the following presentation in
October, 1992, to the state convention of the National Federation
of the Blind of Michigan:
Hi, my name is Dawn Neddo, and my son is Kyle. Many of you already
know Kyle. We've only been involved with the NFB for one year, but
the help, information, and encouragement you have given us makes
the time we've had with the NFB seem much longer.
One year ago we came to this convention frustrated, uninformed, and
afraid. Today, because of the NFB, our family has a better
understanding of Kyle's blindness and much more hope for his
future.
One year ago at this convention we bought Kyle his first cane. His
former teacher of the visually impaired would not allow Kyle to
have a cane without her teaching itþwe þmight teach him bad cane
habits.
Kyle has used his cane for one year now. He takes his cane
everywhere he goes. Everyday he gets his cane and walks down the
steps of our front porch, down the driveway to the gravel. There he
waits for the bus to pull up. His bus driver says Hi. and Kyle
walks toward her voice, climbs up the steps, and finds his seat. He
tells me to stay in the houseþhe will do it by himself.
About a year ago Steve Handshu (a member and leader in the NFB of
Michigan affiliate) became Kyle's advocate for his Individualized
Education Program (IEP) meetings. With Steve's help, Kyle is now in
the neighborhood Headstart Preschool Program. It was a battle to
get Kyle in this programþeven though ten percent of Headstart's
enrollment has to be handicapped children. (Boy did they search for
handicapped kidsþanything but this blind kid.)
We finally found out he was in the program. But the struggle wasn't
over yet. They didn't want him to start with the other children.
They wanted him to wait until the staff was trained. I told them I
didn't feel this was fair; besides, Kyle would train them. It
really wasn't as hard as they were trying to make it.
They asked me to promise to go with Kyle the first week. I agreed.
After one week of a few minor problemsþsuch as taking turns,
sitting up, looking at the book being read (even though Kyle is
totally blind) and tattling on the teacher when she told him to
close his mouth, I thought he was doing fine. But at the end of the
first week I was told that they had searched deep in their souls
and had decided I would have to come with Kyle every day for at
least two weeks until they felt they could handle it.
Kyle is doing fine. None of his school problems are related to his
blindness. They are all normal little boy problems. Most of the
problems come about because he is independent, outgoing, and very
verbal.
Because of Steve's involvement, Kyle has a new VI teacher
consultant and an orientation and mobility instructor twice a week
for one-and-a-half hours per day. He has a Braille writer in the
classroom which he is learning to use. Kyle's new VI teacher is
very happy with him. She's eager to work with him, and he is eager
to work with her. He has friends and the kids enjoy playing with
him. He loves school.
But this is only the beginning. We have a lot of work ahead of us,
and in our school district we are probably going to have to push
every step of the way. Kyle needs Braille; he needs to use his
cane. We need to push for the slate and stylus's being introduced.
His teachers are well meaning but totally uneducated about
blindness. They are afraid of having a blind child in their class.
They often do not want to take a few extra moments to fully explain
something to Kyle.
It will be an ongoing struggle, I'm sure, but I know that with the
involvement of the National Federation of the Blind we can get what
is best for Kyle. Thank you all for your inspiration.
PARENT POWER
Reports from Divisions and Chapters of the National Organization of
Parents of Blind Children
Mrs. Barbara Cheadle, President
Parents, I find, really want to know more about what parents groups
are doing around the country. What can a parents of blind children
group accomplish? Are they all limited to being only support and
social groups, or can they become something more? Can a parents of
blind children organization really make a difference in the lives
of the blind children in a particular state or community?
To answer these questions, we are establishing Parent Power as a
regular feature in Future Reflections. In this feature we will
publish reports about the many varied and exciting activities and
projects carried out by our National Organization of Parents of
Blind Children's state divisions and chapters. We are calling it
Parent Power because that's why we are organizedþso we can develop
and exercise the power necessary to bring about equality and
opportunity for our blind children.
As you read the Parent Power reports, you may want to refer back to
the following list of goals of the National Organization of Parents
of Blind Children. These are the goals we have set for our
organization and which we strive to accomplish in even our fun,
social events. If you like what you read and are interested in
joining a local NOPBC group, want to organize an affiliate in your
area, or you represent an independent group which may be interested
in affiliating with NOPBC, just fill out the form at the end of
this article and send it in. We want to hear from you!
National Organization of Parents of Blind Children Goals and
Objectives:
1. To create a climate of opportunity for blind children in home
and society.
2. To provide information and support to parents of blind children.
3. To facilitate the sharing of experience and concerns among
parents of blind children.
4. To develop and expand resources available to parents and their
children.
5. To help parents of blind children gain perspective through
partnership and contact with blind adults.
6. To function as an integral part of the National Federation of
the Blind in its ongoing effort to eliminate discrimination and
prejudice against the blind and to achieve for the blind security,
equality, and opportunity.
REPORT FROM SOUTH CAROLINA
National President of Parents Division Addresses South Carolina's
Parents
by Donald C. Capps, President NFB of South Carolina
From the August, 1993 issue of The Palmetto Blind, the newsletter
of the NFB of South Carolina.
Barbara Cheadle, of Baltimore, who serves as President of the
Parents Division of the National Federation of the Blind, addressed
the Parents Division of Blind Children of the NFB of South Carolina
at a special May 29th luncheon, held at the Federation Center of
the Blind.
The luncheon, compliments of our good Federation samaritan, John
Fling, who was on hand to greet the gathering, attracted some forty
parents and children from across the state. Our thanks also to our
staff member, Robin Fruitticher, for an excellent job of preparing
the luncheon.
Our distinguished national speaker's keynote address was on the
subject, Why Blind Children Need Blind Role Models. Mrs. Cheadle,
the mother of a fifteen-year-old blind son, emphasized the
importance of blind children developing wholesome attitudes from
those learned from the best of blind role models, who are generally
leaders in the Federation.
I spoke on the major accomplishments of the NFB of South Carolina
in the area of special service to blind children, including: 1) the
adoption of a law in 1983 providing for the participation of four-
and five-year-old blind children in the state's kindergarten
system; 2) a law passed in 1989, with the requirement that all
vision/itinerant teachers of the blind be competent in Braille; and
3) the passage of the Braille literacy law in 1992, providing for
greater Braille literacy for blind and visually impaired children
across the state.
I also talked about the special Children's Camp we have for one
week every year at Rocky Bottom Camp of the Blind.
Mrs. Sarah Jane McCracken of Mayo, the mother of 10-year-old
Jessica, who came in number three nationally in the NFB-sponsored
contest, Braille Readers are Leaders, spoke on the perspective of
the parent of a blind child. Mrs. McCracken emphasized the need for
strong advocacy for all blind children. Mrs. Lin MacKechnie, acting
principal of the South Carolina School for the Blind, also
addressed the group.
The Parents Division elected five outstanding leaders: Mrs. Sarah
Jane McCracken, President; Mrs. Gert Williams, First Vice
President; Sheila Compton, Second Vice President; Gail Coppel,
Secretary; and Paula Payne, Treasurer. Everyone present joined the
Parents Division.
REPORT FROM MICHIGAN
by Dawn Neddo, President Parents of Blind Children Divsion of the
NFB of Michigan (POBC/MI)
We are well into the school year here and our Parents Division is
looking forward to our NFB State Convention in November in East
Lansing, Michigan.
We had a successful summer. We had a whole week of NFB day camp. We
had a lot of fun and friendship. We went to farms, horseback
riding, picnics, swimming, nature trails, and sightseeing in
Detroitþall of this under the direction of our President, Allen
Harris, and NFB members Steve Handshu, Georgia Kitchen, Joy Osmar,
Angela Curvin, and POBC parents. The children made friends, had
fun, and learned many blind skills in the process. My own son,
Kyle, age five years old, made the comment as we walked on the
paved parking lots each day and heard the sound of canes moving, My
friends are all using their canesþthe canes are singing. Day camp
was very much worth our time and effort. I can't wait until next
year.
We have many ideas for fall and winter. In October we start our
Saturday Enrichment Program. Twice a month NFB blind members work
with blind children on alternative techniques. Braille is a big
focus, as is orientation and mobility.
We will have a busy year. All of us in Michigan's POBC are eagerly
looking forward to the 1994 NFB Convention in Detroit. See you
there!
REPORT FROM IOWA
What A Great Year!
by Debra Smith, President Parents of Blind Children Division of the
NFB of Iowa (POBCI)
Reprinted from the POBC of Iowa Newsletter.
POBCI will soon be celebrating its first anniversary, and what a
great start we have had. We met last fall and formulated several
goals which we have successfully reached.
We decided we would work closely with our blind colleagues to help
the passage of the Braille literacy bill. We wrote letters and made
numerous calls to our state legislators showing our support of this
bill. Deb Smith and her daughter Kallie traveled to Des Moines,
where they joined other Federationists, including our state
President, Peggy Pinder (now, Peggy Elliott), to talk to the
legislators in person. President Pinder, Deb, and Kallie also met
with Representative Grubbs, who is the Education Committee Chairman
in the house and the Smiths' representative. Representative Grubbs
expressed his strong support of the bill. This bill passed
unanimously in the house and in the senate. This law will prove to
be one of the most important pieces of legislation to affect our
children for years to come.
The POBCI President, Deb Smith, appointed a Braille Readers are
Leaders Contest committee for our state. Kim Brown served as the
chairman of this committee. We sent each child from Iowa who
entered the national contest a Braille letter of congratulations
and a brand new $10.00 bill. Next year the committee has plans to
expand the program and present some other gifts as well. This year
Iowa had the following seven participants: Lauren Back, Beau
Borton, Jacob Elsberry, Rachelle Wheat, Megan Miller, Tia Sammuel,
and Kallie Smith.
The Bix Beiderbecke Chapter of the Quad Cities and POBCI entered a
joint fund-raising project last summer. The two groups sold candy
bars. Since a number of parents were also members of the Bix
Chapter, the two groups decided to have one project and split the
money. This sale is just one more example of working together with
our blind colleagues. This time we earned money!
We also decided to distribute more information. In the past year we
have mailed four issues of our newsletter as well as additional
articles published by the National Federation of the Blind. We also
distributed parent packets to parents who were interested in
additional information. For parents who become members we send
copies of various paperback books from our Kernel collection.
This is just the first of many years to come, as we work closely
with our blind colleagues, sharing their knowledge, their
leadership, and their friendship.
REPORT FROM CONNECTICUT
by Betty Woodward
Editor's Note: We do not yet have an official parents group in
Connecticut, but we will soon. As you can see from the following
report there is much support for parents and their children from
our Connecticut affiliate of the NFB.
Dear Barbara,
As you can see from the enclosed flier and agenda, our seminar for
parents of blind children and students was an all-day event, and it
included activities for children as well. Everyone who attended
seemed glad to be there, and they generously participated
throughout the day.
Nine families were represented, as well as several active
Connecticut Federationists. Twelve children, ages two through
twelve, five of whom were blind, participated in the children's
activities program. A thirteenth youth, who is sixteen and is an
NFBC scholarship applicant, attended the entire seminar with his
parents. Two of the five blind youngsters, who were twelve years
old, moved between seminar and activities.
Betty May (wife of Reverend Howard E. May, the first president of
the National Federation of the Blind of Connecticut); her daughter,
Sue; Cherie Heppe, member of the Greater Hartford Chapter; and Sue
Morand, member of the Greater Waterbury Chapter, worked together
planning and executing a full schedule for the children. They used
modeling clay, made their own lunches, and took a walk by the
famous New Haven Green, using long white canes, of course. The
Sunday School rooms had been made available to us, so there were
lots of toys and books on hand.
Meanwhile, back in the meeting room, parents heard from a panel of
blind students: twelve-year-old Christy Killion (two time winner of
Connecticut's Braille Readers are Leaders Contest); Jesse Ruffin;
medical student Mark Stracks; law student Christopher Kuczynski;
and Michael Gosse, recent Lehigh University graduate with a Ph.D.
in electrical engineering.
A great deal of literature was available, and parents were eager to
take some home. Early in the day, Gina Woolford stood up in front
of the group with a print copy of the National Federation of the
Blind's A Resource Guide for Parents and Educators of Blind
Children by Doris Willoughby in her hand. She held it up in front
of her and said, Don't go home without one of these books. Gina and
Keith have a fourteen-year-old son who is blind. Keith wrote an
article for our Connecticut Federationist (1993, Spring edition)
sharing some of their concerns and hopes.
Parents and students talked about cane travel, Braille, school, how
to, and other issues. I think parents went home with hope and
promise for the future of their children.
As a result of the seminar, one of the students who had formerly
refused to use a cane personally requested one of our folding canes
from the Connecticut White Cane Bank. Also, two of the families who
attended the seminar are planning to attend our 1993 NFB National
Convention.
REPORT FROM ILLINOIS
Parents and Blind Children Enjoy Day of Fun
by Deborah Kent Stein
Reprinted from The Braille Examiner, Spring/Summer, 1993, issue,
the newsletter of the National Federation of the Blind of Illinois.
For eight-year-old Lindsay Sloan, the best part was the
supermarket. It was just like Jewel Foods, where she shopped with
her mother. But here the carts were child-sized, the shelves were
all within easy reach, and the fruits, vegetables, and meats were
made of plastic.
The miniature supermarket was just one of the intriguing displays
that parents and children explored at the Kohl Children's Museum in
Wilmette, Illinois, on May 15, 1993. Everywhere there were new toys
to discover and musical instruments to play. Children could climb
aboard a wooden sailing ship or unearth artifacts in a simulated
Egyptian desert. Twelve-year-old Greg Skrzesinski had his moment of
glory as a rock star, dancing before TV cameras to the beat of
recorded music. Two more twelve-year-olds, Katie Zodrow and Tiffany
Weber, displayed their talents on piano and guitar. Kelsey Grau,
age three, became fascinated by an enormous Egyptian-style statue,
and repeatedly asked to go back and sit on toe.
It was Kelsey's mother, NFBI Parents Chapter board member Amy Grau,
who conceived the idea of the museum outing. We've held workshops
and seminars and things, she pointed out at a meeting in January.
Why don't we try something different? Let's plan something fun.
In all, nine blind children and their families gathered at the
Kohl's Children's Museum on the appointed day. Several of the
families were newcomers who had never taken part in a
Federation-sponsored activity before. In the safe, child-friendly
environment of the museum, kids explored freely while parents got
to know one another. Afterwards, over lunch at a nearby pancake
house, there was time to share experiences and resources.
By the end of the day, many old ties had been strengthened, and new
friendships had a chance to be born. Some parents seemed to catch
the Federation spirit right away. This is the best day we've spent
since our son was diagnosed, said Karen Brooks, the mother of
nine-month-old Jordan. It's wonderful to know we can meet blind
people of all ages, and find out what he's likely to experience at
all different stages of his life.
There will always be a place for workshops and seminars. But it's
wonderful to know we can get so much important work done and have
so much fun along the way.
REPORT FROM MARYLAND
1993 in Review: Report to the State Convention
by Loretta White, President Parents of Blind Children Division of
the NFB of Maryland
State Convention is always a very special time. For many of us, it
is the only opportunity we have to actually see each other in
person. It reminds me of a family reunion, a time when we can talk
about how our children are doing, and marvel at how much they have
grown. It is also a chance for us to step back out of the hectic
nature of the year and take stock of what we have accomplished over
the year at our Parents Luncheon.
Over the past few years, our family has developed some traditions.
One of the favorites is the Christmas Party. The children gather at
the National Center for the Blind in Baltimore for a time of games,
stories, songs, and crafts. The highlight of the party is always a
visit with Santa himself, who always has a special treat for each
child.
January with its cold weather is a great time for fundraisingþif
you're selling chocolate! In 1993, we made nearly a thousand
dollars selling candy bars. Danielle Becker did a great job
coordinating the sale and has agreed to take the job again for
1994. Look forward to a call from her to get your candy soon!
In February, we prepared lunch for the Greater Baltimore Chapter of
the NFB monthly meeting. This is always a lot of fun and an
opportunity for the older kids to help out. After the Chapter
meeting, we had a baked goods auction. This, too, has become a
tradition. In addition to the Parent Division, members of the
Baltimore Chapter help us out by donating baked goods, and then
buying them back. It is great fun to watch the bidding and
excitement, not to mention the addition to our funds! With the help
of Brenda Williams, we also made lunch in April for the Baltimore
Chapter meeting just for the fun of it.
In the spring, the Division was busy with seminars. We had an
education table at the workshop at the Maryland School for the
Blind in April. Then in May, we had an education table at the
Maryland Infants and Toddlers Seminar. Also in May, we held our own
seminar at the National Center for the Blind called Focus on
Braille, Focus on Partnerships. It was a successful seminar that
dealt with the implementation of the Maryland Literacy Rights and
Education Act for Blind and Visually Impaired Students and the use
of Braille in school, at home, and on the job.
Also during the spring, we began our Dinners for Two, Four, Six,
and Eight. In small groups, interested parents are invited to have
dinner in the home of blind members of the Federation. It is an
opportunity to observe blind adults using alternative techniques in
the home setting, to make new friendships, and to ask questions
about blindness. To date, this has been very successful and
rewarding to the families who have participated.
Both our Cane Bank and Newsletter are in their second year. We now
have canes from our bank scattered across the state of Maryland,
and our newsletter has a circulation of about 150 families. As you
know, Mark Bunting is leaving for off-shore duty. We thank him for
his fine work; he has done an excellent job in laying out the
newsletter. We will miss his great recipes and graphics!
The National Convention was held in Dallas this year. The Parents
Division provided scholarships to four families. It was a great
convention, and everyone came home inspired and ready for another
year! We are planning to have scholarships available for the 1994
National Convention in Detroit. We are especially interested in
helping families to attend their first convention. Scholarship
applications are available from President Cheadle. National
Convention is the experience of a lifetime for parents of blind
children. Every parent of a blind child would benefit greatly by
attending!
In August, the Parent Division sponsored the Braille Storybook Hour
in conjunction with the Friends of the Library at the Library for
the Blind and Physically Handicapped in Baltimore. Each story was
read by a blind Federationist and included an activity in the story
theme and refreshments. It was very well attended and everyone had
great fun. The last story hour was followed by a family picnic and
barbecue at Friendship Park. This event was highlighted by a great
water balloon and squirt bottle battle. We are proud to report that
each person present did get wet!
The new Library for the Blind and Physically Handicapped held its
grand opening in September. The Parent Division displayed pictures
from the Storybook Hours and artwork by our children. The children
participated by reading books in the Children's Room as patrons and
visitors toured the library.
This brings us full circle back to state convention. Because it is
Halloween weekend, the Division sponsored a Halloween Party for
children on Friday night. This year was also special in that we
began a special program for Maryland blind teenagers. Through a
grant from the Severn River Lions Club, eleven blind teenagers are
attending this convention with Federation members Aloma Bouma and
Dr. Michael Gosse as chaperons. We are filling their weekend with
activities and many opportunities to learn more about the skills of
blindness and independence from blind adults. To keep the momentum
going for our blind teens, we are forming a subsidiary group of the
Parents Division called the Blind Youth Association. The kids tell
us that they want one of their first activities to be a Career Day
seminar.
I am also excited about the success of this year's luncheon. You
have heard Tammy Jones, a blind teacher of the visually impaired on
the Eastern Shore, give an inspiring keynote address; Jude
Lincicome report on the National Convention, Charles Cheadle talk
about his great adventures in Scouting; and you have listened to
Esther Layton, winner of the Outstanding Educator of the Year Award
for the State of Maryland, speak to us about her philosophy of
educating blind children. It was a joy to see how dedicated and
committed she is to our blind children here in Maryland.
It has been an honor to serve as your President. Your support and
friendship to me and my family have been invaluable. I look forward
to serving our children in my new role as Second Vice President and
to supporting our new President together with you. We are indeed
growing and getting better each year. Through unity in the
Federation, we can and are building bright futures for all our
children!
BRAILLE COMPETENCY TEST READY FOR USE
Editor's Note: The following press release was issued by the
National Library Service on January 7, 1994. It was later published
in the March, 1994, Braille Monitor. This test marks an important
milestone in the campaign to promote Braille literacy. We applaud
the blindness field's commitment to devising a fair and impartial
way of demonstrating the Braille reading and writing skills of
those licensed as teachers of blind children. Here is the release:
On January 7, 1994, the National Literary Braille Competency Test
was released for use by all interested parties.
The test is intended primarily for teachers of children and adults.
It is designed to allow candidates to demonstrate a basic
competency in literary Braille. The test is composed of three
parts: part one, writing skills, asks the candidate to transcribe
materials using a slate and a Braille writer; part two, reading
skills, requires the candidate to identify errors in a brief
Braille selection; and part three, multiple choice, presents the
candidate with twenty-five questions on the literary Braille code.
Since January, 1943, the National Library Service for the Blind and
Physically Handicapped (NLS), Library of Congress, has been
responsible for the development of training materials and
certification programs for Braille transcribers and proofreaders.
These programs were designed for the certification of volunteers
producing Braille texts for educational and leisure reading.
For some time educators and consumer groups have been concerned
about the quality and quantity of Braille instruction that blind
children are receiving in school. In 1989 the Committee on Joint
Organizational Effort asked the Library of Congress to explore the
feasibility of creating a national certification program in Braille
for teachers.
The Library, of course, readily agreed; and our Braille Development
Section immediately began the planning process. An advisory
committee composed of educators, rehabilitation teachers,
transcribers, and consumers was established to study the
feasibility of developing a test of Braille competency for
teachers. This committee recommended that NLS develop certification
tests in the primary Braille codes for teachers.
In 1991 an editorial committee was formed to advise on the
development of the test. They developed guidelines for:
Content of the test. It was determined that the test would not
attempt to measure teaching methodology but only subject matter
knowledge. Universities would be encouraged to continue to address
methodology as a part of their teacher-preparation programs. State
departments of education and professional standards boards would be
encouraged to develop their own tests of methodology as needed.
Credibility protection of the test. Issues included number of
equated tests, frequency of revision, and statements prohibiting
reproduction.
Reading level of the test. It was decided to create one test for
teachers for all educational levels; and
Multiple versions of the test to the same location.
The trial test was sent to the editorial committee in the spring of
1992. Ten reviewers in the United States and Canada evaluated the
test. After the test and instructions were revised, the peer review
took place during the summer of 1992. Forty-five people in fifteen
states and Canada, who had been recommended or had expressed
interest, were sent copies of the test. Again revisions were made.
In 1993 four forms of the final test were developed and made ready
for use.
Concurrent with its release, the National Literary Braille
Competency Test is undergoing a process of validation. Until the
formalities of this process have been completed, all of those who
ask to take the test will be informed of the pending validation.
The National Literary Braille Competency Test has been developed
with every possible consideration for test content and testing
rigor. NLS staff will carefully monitor its use in the field and
stand ready to make whatever modifications and accommodations are
necessary in order to facilitate the achievement of stated goals.
For further information contact Frank Kurt Cylke, Director,
National Library Service for the Blind and Physically Handicapped,
Library of Congress, 1291 Taylor Street, N.W., Washington, DC
20542; or call (202) 707-5104 or fax (202) 707-0712.
A TRIBUTE TO KATE
by Kathy and Nick Andrus
From the Editor: Kathy and Nick Andrus were among the several
hundred parents who were the earliest readers of Future
Reflections. In the October/November, 1982, issue (volume I, number
5) I remember publishing a helpful tip letter from Kathy in the new
Hear Ye! Hear Ye! feature. Her daughter, Kate, was only eleven
months old at the time. Kathy also asked us to publish her name and
address in the magazine (which I did) so she could network with
other families who had children with aniridia (the cause of Kate's
blindness). A few years later, Kathy contacted the National
Federation of the Blind about getting a cane for Kate. She and her
husband had read articles in Future Reflections about the benefits
of early cane use and were considering getting one for Kate.
I was, therefore, greatly saddened when I learned of Kate's death
about a year and a half ago. Kate's life was far too short, but
there was nothing limited about her courage and the impact she had
on those around her. Kate was not only special to her family and
friends, but she was importantþwhether we personally knew her or
notþto all of us in the National Federation of the Blind. It was
for Kate, and for all blind children like her, that we in the
National Federation of the Blind established Future Reflections and
the National Organization of Parents of Blind Children. But Kate
was even more special than that. Although they probably never
thought about it this way, Kate and her family were pioneers. Kate
was part of that original group of childrenþa few hundred at
mostþwho were the first to be raised from birth with the
philosophical and practical guidance, via Future Reflections, of
the National Federation of the Blind.
For these reasons, we mourn Kate's passing and join with her
parents, Kathy and Nick Andrus, in the following A Tribute to Kate.
On July 2, 1992, our daughter Kate died three months before her
eleventh birthday. Born with aniridia, glaucoma, and cloudy
corneas, Kate also had a congenital heart condition, aortic
stenosis. As a student at Pine Spring Elementary School in Fairfax
County, Virginia, Kate spent five happy years in school. She was in
Anna Swenson's vision class and mainstreamed for a portion of each
day. She loved school, especially science, math, and being with her
friends!
In November, 1991, Kate had her first heart surgery to replace the
aortic valve. All appeared to go well. However, in the three months
that followed many complications developed. In March, 1992, she
reentered the hospital with endocarditis, an infection in her
heart. Another valve surgery along with two pacemaker surgeries
followed during the long two and one-half months she was in the
hospital.
After she returned home in late May, she appeared to be making
excellent progress and was able to do some of her favorite things
again, such as swimming, roller skating and going to school for
short periods of time. But she tired easily and was not building up
the endurance that the doctors assumed would occur. Sadly, on the
evening of July 1, she began to feel ill and died unexpectedly here
at home with her parents and four older sisters.
During the many long months Kate was hospitalized and/or
recuperating at home, her vision teacher came regularly to see her.
On days when she was in intensive care, or just too sick to do
anything, Miss Swenson would come and read to her and tell her
about what was going on at school. She would often bring Braille
messages and tapes from Kate's friends.
How pleased Kate was the day that a couple of her adult friends
arrived at the hospital with their guide dogs to visit her! But the
hospital administrators were scurrying about trying to determine
their policy about guide dogs in the hospital and fearful of a suit
being filed should they err in the handling of this occasion. Since
Kate was soon to be released from intensive care, we were able to
easily move her to an area of the floor that was reserved for
visitors so she could be with her friends. Experiences like this
kept her going and gave her hope.
Our experience in the hospital with Kate was filled with a series
of situations which reflected a lack of sensitivity and
understanding by some of the health care professionals. Some were
put off by Kate's insistence that everyone explain the details of
what was about to happen to her. They were reluctant to spend the
time that Kate needed to help her understand what was about to be
done to her. Her questions annoyed those who seemed to be always in
a hurry.
We did encounter several outstanding professionals who recognized
that the hospital can be a scary setting for children, and they
helped give Kate some control over her own situation. One nurse
found an I.V. pole that had a large handle so that Kate could push
it herself as we walked around the corridors. With regular poles
we would have to move it for Kate, often resulting in inadvertent
pulling on her I.V. lines. Another thoughtful nurse taught her how
to carefully remove the tape on a bandage securing a central I.V.
line. The bandage had to be changed daily. By giving her some
minimal control over her environment, she seemed better able to get
through this otherwise arduous and tedious experience.
Kate knew the details of all of her surgeries. The surgeon and his
assistant took great pains in explaining procedures to her. At one
point she asked the surgeon if he would be opening up her chest
with a regular saw or a chain saw! She was curious about the
heart-lung machine and wanted to know how it would be used to
circulate her blood. She remembered the times that medicines were
to be givenþand she sometimes had to remind us when things were
getting bogged down. The voices of the regular, daily visitors were
etched in her memory. She looked forward especially to the morning
sounds of the breakfast trays, the cleaning carts, and the friendly
people who always stopped to chat with her. Her body was stuck and
cut beyond belief, but she always seemed to cope as long as she was
told beforehand what was to happen to her.
Her cane is still now. The wonderful Braille books and stories that
she wrote are stacked on the bookshelf. Kate used to talk a lot
about heaven, and she was curious as to whether she would be blind
when she died. We assured her that as the Bible says she would be
able to see forever. That initial news was met with disappointment.
Oh darn, then I won't get my guide dog! which was her most
persistent goal in life!
We miss our Kate. She had so many things to complicate her life,
but they never seemed to stop her. She was at times slowed down but
she never gave up. Her bright and spunky manner kept the rest of us
going when it was hard to keep moving. On receiving her first cane
when she was three, Kate exclaimed, At last, I have my very own
field hockey stick! (Two older sisters were players.) We assured
her that her cane was far better than a field hockey stick. And it
was, as it proved to open up new areas of independence for her
throughout her short life.
We appreciate the support we received through the years from our
friends and from the National Federation of the Blind and hope that
one day we can give back as much as has been given to us.
French Braille Club Seeks Pen-Pals
A few issues ago, we had an article about a Braille teacher who
started a Braille club for sighted elementary students (How to Make
a Braille Wave, Fall, 1992). Such clubs are rare, so you can
imagine my surprise, and delight, when I received a letter from the
founder of a similar Braille club in France. The members of this
club, according to Mrs. Monique Bretelle, the founder and director
of the club, are twenty-five sighted students (boys and girls)
between the ages of 13 and 15. These club members want to
correspond with blind Braille students in the U.S.A. They would
write (using Braille, of course) in English, or French, or both;
whichever their pen-pal preferred. The students want to exchange
ideas and share information about themselves and their culture.
They also hope to improve their English skills. Any blind student
who is interested in corresponding with a member of this French
Braille Club should write, in print or Braille, to Mrs. Bretelle,
CollŠge Les MoliŠres, Club Braille, 78690 Les Essarts Le Roi,
France. It would be helpful to include some information about
yourself (age, interests, etc.) so a proper pen-pal match can be
made.
Print-Braille Children's Book is Available
Naomi Knows It's Springtime, a children's book with a blind
character, was reviewed in the Spring/Summer, 1993, issue of Future
Reflections. We were advised after publication of the review that
the book is available in print-Braille format from the National
Braille Press (NBP). It was one of NBP's April, 1993, Book of the
Month Club selections. It is $14.95 (same price as the print book).
For information about purchasing the book contact National Braille
Press, 88 St. Stephen Street, Boston, Massachusetts 02115, (617)
266-6160.
Braille Atlases & Dictionaries Available
We have been asked to publish the following information:
The American Printing House for the Blind has two Braille atlases
for sale, the Braille World Atlas and the Braille United States
Atlas, and two dictionaries for children, American Heritage First
Dictionary and American Heritage Children's Dictionary. Each can be
purchased for under $20. For information about how to order these
books contact American Printing House for the Blind, P.O. Box 6085,
Louisville, Kentucky 40206-0085, (502) 895-2405.
Cocaine and Vision
The following item is reprinted from the July/August, 1992, issue
of Pediatrics For Parents. The information originally appeared in
the March, 1992, Ophthalmology Journal.
The detrimental effects of cocaine use during pregnancy seem
endless. Infants born to cocaine using women have an increased risk
of visual problems. A recent report describes 13 infants exposed to
cocaine in utero with optic nerve abnormalities, delayed visual
development, and prolonged edema of the eyelids. At age two months
these babies displayed a lack of visual responsiveness to their
surroundings. The prolonged eyelid swelling is potentially
vision-threatening and is, according to these doctors, a new
clinical entity.
International Computer Camp 1994
Although children from the United States of America are not
eligible for the following camp, I thought our readers might find
the information interesting. Although we have made no effort to
solicit readers from other countries, word about Future Reflections
does get around. This announcement came from Sabine Koch,
Librarian, University of Karlsruhe, Study Center for Visually
Impaired Persons, Germany:
The Study Centre for Visually Impaired of the University of
Karlsruhe (Germany), the Pilot Project Computer Science for the
Blind of the University of Linz (Austria), the Training Centre for
Electronic Data Processing of the Vocational Support Institue in
Graz (Austria), and the Institute for Hearing and Visually Impaired
in Linz (Austria) will hold the First International Computer Camp
for blind and partially sighted children and teenagers. Children
from the following countries are invited to participate: Austria,
Belgium, Czech Republic, Germany, Great Britain, Greece, Slovac
Republic, and Spain. The number of participants from each country
should be five visually impaired and two sighted persons. Each
person shall be able to use their national language because the
persons in charge will come from each country represented. However,
knowledge of English for the joint activities is desirable.
Participants 16 to 18 years of age will attend the camp in Linz,
Austria, from July 30 to August 8, 1994. Participants ages 10 to 15
will stay in Graz, Austria, from August 29 to September 4, 1994.
For further information contact: University Karlsruhe,
Studienzerntrum Fr Sehgesch„digte, Engesserstr. 4, D-76128
Karlsruhe, Germany. Telephone ++49-721/608-27 60; or contact
University Linz, Institut fr Informatik, Modellverusch þInformatik
Fr Blinde,þ Altyenbergstr.69, A-4040 Linc, Austria. Telephone
++43-732/24 68-92 32.
Who Goes to College?
The following information is taken from the article, More College
Freshmen Report Disabilities, which was published in the Winter,
1992, issue of Counterpoint, a publication of the National
Association of State Directors of Special Education.
According to a 1991 survey of 140,000 freshman college students
with disabilities, about 25 percent of them claimed to be visually
impaired. This group had a higher percentage and larger number of
persons attending college than any other disability represented in
the survey. More statistical information about college students
with disabilities is provided in College Freshmen with
Disabilities: A Statistical Profile, by Cathy Henderson. This book
is available for $10 per copy, prepaid, from the American Council
of Education, Department FD, One Dupont Circle, Suite 800,
Washington, D.C. 20036; (202) 939-9320 or (800) 544-3284 (voice and
TDD).
Leaps & Bounds
Doris Willoughby, who recently moved to Arvada, Colorado, sent us
information about a new commercial indoor playgroundþLeaps &
Boundsþwhich has just opened a facility in Arvada. Mrs. Willoughby
noted only one problem when she visited the place: a public
address system that is a little too loud. The following information
comes from the Leaps & Bounds brochure and a local newspaper
article:
Leaps & Bounds is a wholly-owned subsidiary of McDonald's USA. The
company expects to have 91 outlets open around the country by the
end of 1994. For an entrance fee, parents and children from ages
one through twelve can leap, slide, crawl, climb, and play as hard
as they like, on equipment that's designed with safety in mind.
Kids can explore Leaps & Bounds' maze of brightly-colored tunnels,
slides, bridges, ball pools, and more. There is a play area just
for infants and toddlers and there are special rooms to accommodate
children's parties. For extra security, a special parent-child
identification system makes sure that adults and children who
arrive together leave together. Food is served at a concession
stand, and staff play with the children as well as serve food and
otherwise supervise a safe play environment.
ROP Babies
We have been asked to publish the following information:
In 1989 our daughter Katie was born three months premature,
weighing just 2 pounds 3 ounces. After nearly three months in the
intensive care nursery, we were ecstatic when her doctor told us
that Katie could come home in a week. Two days later we learned
that Katie was blind because of retinopathy of prematurity.
Retinopathy of prematurity, or ROP (formerly called retrolental
fibroplasia or RLF), is a disease of the retina that prevents the
eye from developing properly and can lead to permanent damage and
blindness even later in life. ROP is responsible for more blindness
among children in this country than all other causes combined.
In the past few years I have conducted an exhaustive search for
information about ROP. In talking with adult friends who have ROP
and with parents of children with ROP, the overwhelming need for
information became obvious. I started the volunteer group Prevent
Blindness in Premature Babies to provide support and information to
individuals and to parents of children who have ROP. Through our
newsletter we can share what we've learned and ask for information
from each other.
Prevent Blindness in Premature Babies is also compiling a national
registry of individuals with ROP to determine how often ROP occurs
and the effects of ROP in later life. If you or your child was born
prematurely and has any degree of vision problem, please write and
request a copy of our newsletter and survey.
Today, at five years old, Katie is a happy, healthy, loving, and
lovable handful. I look forward to hearing from you and to making
our group a success. Margie Watson, founder. Write to Prevent
Blindness in Premature Babies, P.O. Box 44792, Madison, Wisconsin
53744-4792.
Braille Music Piano Course
We have been asked to print the following information:
It has been found that print music, composed for the sighted and
transcribed into Braille, is impractical for beginning blind
students because the learning approach is quite different. The
two-volume Braille Music Piano Course Book I was designed to teach
Braille music symbols (which are a different code than literary
Braille) in a progressive pattern with direct application to piano
performance; that is, in the same manner that sighted students
learn to read print music as they learn to play. The print music
which is printed opposite each Braille page makes the material
easier for the sighted teacher or parent to use with the blind
student. It is hoped that this book will provide a useful and
helpful start in the enjoyment of music for the Braille-reading
younger child or adult who has had no musical background. For more
information about the Braille Music Piano Course book and how to
order it, write to CaraLynn Pender, HCR 4 Box 2746, Lewiston,
Michigan 49756.
Adjustable Braille Stand
We have been asked to publish the following announcement:
This adjustable table-top BRAILLER STAND is made of solid oak and
oak plywood, with a polyurethane finish. It measures 10 inches deep
by 15 inches wide by 3 and 5/8 inches high at the back. The incline
adjusts to six different positions ranging from 8 degrees to 18
degrees to provide maximum individual comfort when transcribing
and/or proofreading Braille with the Perkins Braille Writer. The
BRAILLER STAND may be purchased by sending $19.95 (California
residents add $1.55 sales tax) to Michael Emerson, 17209 Santa
Barbara Street, Fountain Valley, California 92708. For more
information call (714) 841-3887.