Future Reflections

Volume 24 Number 1 Winter/Spring

[PHOTO 4thStLive exte_7_Dan Dry]

Southern hospitality, good food, good times, great shopping, historic attractions, music, and culture: Louisville—site of the 2005 NFB Convention (July 2 - 8)–has it all! Fourth Street Live! (above) is Louisville’s premier entertainment and retail district, located on Fourth Street between Liberty and Muhammad Ali Boulevards, in the heart of historic downtown Louisville. It is just a short walk from the Galt House Hotel, headquarters of the convention. For more information about what there is to do in the Louisville area, see the article about Louisville in the February 2005 issue of the Braille Monitor available under the “Publications” option on the NFB Web site at <www.nfb.org>.


Future Reflections

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We are pleased to announce that Future Reflections is now available at no charge.  As you may know, Future Reflections has always been free to dues-paying members of the National Organization of Parents of Blind Children (NOPBC).  A $15 subscription contribution was requested from non-members. However, we always gave complimentary subscriptions upon request—no questions asked, no strings attached, no invoice a year later.  Now, you don’t have to ask; it’s FREE to all who want it!  We will continue to provide readers with the opportunity to join the NOPBC and to make financial contributions.

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Table of Contents

2005 NFB National Convention

In The Drivers Seat

2005 Convention Bulletin

Aaron’s Convention Story

by Aaron Richmond

Fingers on Buzzers! Kerri Regan's Jeopardy! Debut

by Anna Cheadle

Interview with a Sophomore

by Judi Ross

Beyond Textbooks on Time: Is the Battle for Braille Literacy Over?

by Mark Riccobono

Who Can We Share This With?

by Donna Labarre

A Girl's Best Friend is Back!

by Barbara Cheadle

Finally, A Book to Help Parents of Disabled

by Helen Henderson

Ways to Increase Independence

by Sandra Stirnweis

The Cane and I

by Judy Sanders

An Introduction to Dr. Lilli Nielsen's Active Learning

by Stacy Shafer

Distinguished Educator Award

by Sharon Maneki

Emerging Victorious

by Anna Cheadle

Confessions of a BrailleNote User

by Jennifer Dunnam

Five to Make Ready

by Patricia Morrow

Blind Child Featured in HBO Special

by Mike Malloy

Extended School Year Services

by Leslie Seid Margolis

Hear Ye! Hear Ye!


Slate Pals


2005 NFB National Convention

[PHOTO Belle of Louisville with photo credit]

The Belle of Louisville

BACKGROUND: The 2005 convention will be the largest meeting of the blind to be held anywhere in the world in the year 2005. The Convention is the supreme authority and policy-making body of the National Federation of the Blind and voice of the nation's blind.

PLACE: The Galt House Hotel, Louisville, Kentucky

DATES: July 2 through July 8, 2005

Pre-convention seminars for parents and others-July 2, 2005

Division and national committee meetings-July 3-4, 2005

Plenary sessions-July 5 through 8, 2005

MEETINGS: Plenary sessions will be held in the Grand Ballroom located on the second floor of the East Tower of the Galt House Hotel beginning on Tuesday, July 5, and continuing through Friday, July 8.

PROGRAM: NFB conventions give government representatives, agency administrators, and leaders in politics, business, and industry the opportunity to address and respond to a large nationwide audience primarily of individuals who are blind or visually impaired. The topics of interest include: relevant civil rights issues; current issues and trends in the education of blind children; rehabilitation of the blind for competitive employment; specialized library services for the blind; advancements in technology; and other timely topics.

BANQUET: The convention includes a large, well-attended banquet to be held in the Grand Ballroom at the Galt House Hotel beginning at 7:00 p.m., Thursday, July 3rd. The program for the evening will feature an address by NFB President, Marc Maurer. The banquet program will also include the presentation of over $100,000 in scholarships to thirty outstanding blind students. Banquet tickets may be purchased at convention registration.

CONVENTION REGISTRATION: The registration fee is $15, and registration will open Sunday, July 3, at 9:00 a.m. Please note that the various NFB divisions and committees may charge additional fees for the seminars, workshops, receptions, and other related activities which they sponsor before and after the convention plenary sessions. These workshop or seminar fees should not to be confused with the convention registration fee.

AGENDAS: Convention agendas are available when you register for the convention. Agendas are available in Braille, cassette tape, disk, and large print. Pre-convention agendas for the Saturday, July 2, events will be available on the NFB Web site and in print and Braille at the NFB Information Table in the Galt House hotel lobby.

HOTEL RATES: Special room rates for those who attend and register for the 2005 National Federation of the Blind convention are as follows: Singles and doubles $59, triples and quads $64. All quoted rates are subject to a tax, which at present is 12.36 percent. A deposit of $60 is required when you make your reservation. To make room reservations contact the Galt House Hotel at (502) 589-5200 or  (800) 626-1814 and tell them you are with the NFB convention. The address of the Galt House Hotel is 140 N. Fourth Street, Louisville, Kentucky 40202.

CHILDCARE: During convention week children between the ages of six weeks and twelve years are invited to join in the fun and festivities of NFB Camp. NFB Camp offers more than just childcare; it is an opportunity for blind and sighted children to meet and develop lifelong friendships. The camp schedule is filled with games, crafts, and special performances designed to entertain, educate, and delight. Pre-registration is required. For more information about fees, hours, etc. contact Carla McQuillan, NFB Camp Coordinator, 5005 Main Street, Springfield, Oregon 97478. Telephone (541) 726-6924.

MORE INFORMATION: For additional information about meetings, schedule, hotel, etc., contact the National Federation of the Blind National Office at 1800 Johnson Street, Baltimore, Maryland 21230, telephone (410) 659-9314. Information is also available on the NFB Web site at <www.nfb.org>.


In The Drivers Seat”

2005 NFB Convention Bulletin

Programs for Families and Teachers of Blind Children

sponsored by the

National Organization of Parents of Blind Children (NOPBC)

Saturday, July 2  –  Friday, July 8, 2005

Galt House Hotel

Louisville, Kentucky

Did you know that one of the technology priorities of the NFB Jernigan Institute is promoting the development of a car that blind people can drive? Fantastic as it may seem, it is entirely possible that today's generation of blind children will one day have the opportunity to operate a vehicle. But blind kids don't have to wait for this to happen to experience being "in the driver's seat." After all, the term is metaphorical, not literal. When we say someone is “in the driver's seat," we mean that this person is in charge; this person has power to choose a course of action and make it happen. Choices, power, control, action, movement, travel; the phrase connotes all these things. In short, "in the driver's seat" means everything that is the opposite of the words historically and universally associated with blindness; words like passive, immobile, limited, and powerless. Fortunately, not everyone believes that those words accurately describe blind people anymore (if they ever did). In fact, thanks in large part to the work of the National Federation of the Blind (NFB), a great many people in our country and around the world have come to believe that blind people can lead normal lives. For over sixty-five years, the NFB has been chipping away at these crusty, false, stereotypical notions about blindness and replacing them with words like normal, okay, respectable, and competent. At the 2005 NFB Convention, the NOPBC will help parents, kids, and teachers expand their vocabulary about blindness as we take a journey together to explore just what it means for blind kids to be "in the driver's seat."

Our journey begins on Saturday, July 2, and ends on Friday, July 8. The NOPBC has events scheduled the first five of those days and on the last two days, Thursday and Friday, we continue our journey in learning about blindness as we watch Dr. Marc Maurer and other blind leaders lead discussions about technology, legislation, and other matters of a critical importance to the future of our blind children. As usual, the NOPBC will also announce the big winner of our 50/50 raffle on banquet night (Thursday), and we will participate in the discussions and reports about the year's progress on Friday, the final day of the convention.

So, to help you plan your trip, here's a brief description and schedule –a map, if you will–of the NOPBC-sponsored convention events:


On Saturday, July 2, the NOPBC kicks off the convention with a full day of activities for the entire family.  The day's events (all of which take place in the Galt House Hotel) include:

Workshop choices include:

1.       Traveling Solo: Focus on the School Years. When, where, and how should blind and partially sighted kids start traveling by themselves?

2.       Exploration: Focus on the Early Years, Ages 0-8. When is the trip, not the destination, the goal of movement and travel?

3.       Braille: The Passport to the World, two sessions; one for novice parents called: Beginning Braille for Parents; and one for parents with advance knowledge about Braille called: Formatting and Producing Braille: What Every Parent and Teacher Should Know.

4.       Cruising the Internet and Other Technology Travels. Two sessions of this workshop will be presented by the Indiana School for the Blind COGS Club and will include demonstrations of technology and questions and answers from a blind student panel.

5.                   Active Learning for the Blind, Multiply Disabled Child.

1.       Puzzles, Brainteasers, and Fun Things to do with Math

2.   Art is for Everyone

3.   So, You Think You Would Like to Run a Meeting? –Microphone and speaker etiquette and techniques for aspiring blind speakers and leaders. (Space is limited in some of the sessions, so preregistration recommended.)






FEES:  $35, two adults plus children. $15 one adult (no children). $25, one adult plus children.  This fee includes a bag lunch hosted by NOPBC leaders in their East Tower Suites. It will also help defray the cost of workshop materials. v


We will send 2005 NOPBC Preregistration packet information by mail, fax, or email. When you make a request for a packet, please give us your name, a phone number, tell us where and how to send you the packet, and tell us if you are a parent of a blind child, a family member, a teacher, a blind adult, etc. You may contact us at:


1800 Johnson Street

Baltimore, Maryland 21230

Email: [email protected] or [email protected]

Fax: (410) 659-5129

Phone: (410) 659-9314, extension 2360 or 2361

(You are invited to leave your request with your name and address if you get a voice mail message. Please be sure to also leave a phone number so we can call you back if we have any questions about the spelling of your name, etc.).

Information and a preregistration form will also be available on the NOPBC Web page at <http://nfb.org/nopbc.htm>.  Sorry, we cannot take credit cards. 


Sandy Taboada, NOPBC Treasurer

6960 South Fieldgate Court

Baton Rouge, Louisiana 70808-5455

Email: [email protected]

Aaron's Convention Story

by Aaron Richmond

[PHOTO Aaron Richmond]

Aaron Richmond

Editor's Note: Should parents bring their kids to the convention, or leave them at home? That's a common question families ask me when they are considering coming to their first NFB convention. I always tell them that, in regard to babies and younger kids, it all depends upon individual preference and family circumstances. However, there are lots of reasons that families should bring their older blind youngsters-and sighted siblings, for that matter-to convention. Aaron Richmond of Maryland outlines some of those reasons in the following essay about his 2003 convention experience. Aaron was about ten-years-old at the time. Here's what he says:

If you had gone to the NFB National Convention in Louisville, Kentucky, you would have had a fun and exciting time. You would have been able to stay in the Galt Hotel, a very nice and very beautiful two-tower hotel. Besides all of this, you would have been able to see and do many things. In the Braille Carnival, there were games and prizes galore. If you had attended the note-taking class (as I did) you would have learned all about the history and progression of the world of technology, as well as how to be a better note-taker. If you had attended the Astronomy Workshop you could have made a model of our solar system and discovered how far the earth is from the moon by looking at your model. I got to see photographs from the book, Touch the Universe. It is a really great book that has raised pictures from the Hubble Space Telescope. The Sensory Safari was very cool. I got to touch a lot of creatures [stuffed animals] from all parts of the United States and Africa. Two animals that I remember are the squirrel and the warthog. The squirrel was fluffy on the body and fuzzy on the tail. The warthog had rough, pinkish-gray skin, and very stiff ears shaped like Trembling Aspen leaves. These are some of the wonderful things that you could have done if you had gone to the national convention located in Louisville, Kentucky.

For leisure time, I did many exciting things. One activity my Mom took me to was the Greek festival. There, I got to try pastries, salads, pies, and smoothies. My Mom, Mrs. Herstein, Mrs. Watson, Mr. Al Maneki, Jessica Watson, Amy Herstein, and I all went together to dinner after the festival. I had delicious rainbow trout and iced tea. Based on the effects of the iced tea, we all told countless jokes that never seemed to end. The next day I found more great stuff to do at the exhibit hall. But the coolest thing that I did was to play computerized UNO. The thing was, if you did something exciting, like play a crazy eight card, it made a sound everybody could hear.

With the workshops and all the fun things I did at this convention, I will never forget it all.


[Note: Maneki is one of the blind leaders of the Federation in Maryland. The Watson's and Herstein's are parents, and Amy and Jessica are blind teens.]


Fingers on Buzzers!

Kerri Regan's Jeopardy! Debut

by Anna Cheadle

[PHOTO Kerry Reagan (2003)]

Kerri Regan picks up some Braille books at the 2003 NFB Convention Braille book flea market.

Seventeen-year-old Kerri Regan was the picture of poise at her Jeopardy! debut, January 27, 2005, (filmed in October, 2004).  She answered questions (that is, questioned answers) confidently; she chatted with Alex charmingly.  She even knocked off a Daily Double with hardly a second thought. 

The game of Jeopardy! is all about not having second thoughts.  Ask Kerri, she'll tell you.  Once the cameras are rolling and the fingers are poised, you have to act before you even know the answer.  It requires a certain amount of faith that when the moment comes, you will be up to the challenge, and that if you're not, you've got the resiliency to bounce back.  Your first thought never even has a chance, if your second thought gets in the way.

The blind know the power of not thinking twice; not thinking twice is assumption in action.  There was a time when an employer assumed, without a second thought, that a blind person was unemployable.  These days, employers do think twice.  They stop themselves.  They worry about what is PC, and wonder if they can ask a candidate how they will be able to find the bathroom during the work day.  This kind of thinking twice is useful only in transit, so to speak.  While thinking twice is better than assumed inequality, it is not nearly so worthy a goal as assumed equality.  The ultimate goal is to have equality at first thought. 

So it is with a child learning the skills of blindness.  There is a place for second thoughts; there is a time to consider one's abilities and rethink what is possible.  But the time for this thinking and rethinking is during routine, not at the brink of opportunity.  Your child should never reduce a genuine possibility to a passing thought because he or she lacks confidence in the skills of blindness.  

This principle is manifest in Kerri Regan's Jeopardy! experience.  After watching Jeopardy! with her for several years, Kerri Regan's aunt and grandmother stated the obvious.  "Kerri, you're really good at this.  You should go on the show."  When Kerri needed to use the Internet to sign up for try-outs, it was no problem.  She didn't give it a second thought, as it should be.  Since the test was completely top-secret, they couldn't have it Brailled.  But no problem, don't give it a second thought: Regan had her dad read the questions while she answered.  After Kerri had made the top 9 in the region, she received a phone call from Jeopardy! asking what accommodations she would need, if she happened to be chosen as a finalist.  Well, no toughie there, Kerri hardly gave it a second thought.  She would need a sheet with Brailled category titles, and the option to use her BrailleNote for Final Jeopardy.  Kerri's years of Braille training (including one infamous summer when she read 22 books) prepared her not to have to think twice when opportunities were thrown her way.  What accommodation would she need?  She would need to read the categories–just like all the contestants–and she would need to write her Final Jeopardy answer–just like all the contestants.  What does a blind person need to read and write?  Braille.  Simple as that.

A month went by before Kerri heard anything more.  Finally, in September the call came.  It was Jeopardy! and they wanted Kerri– they wanted her next month!  Kerri, faced with having to travel across the country to Los Angeles, one of the biggest, busiest cities in the nation, didn't give it a second thought.  She had traveled before, like to NFB conventions in Dallas, Chicago, Charlotte, and Louisville.  Though she did not know what LA had in store, Kerri's extensive mobility training, practice, and willingness to try new things enabled her to act with a certain amount of faith.  When the moment came, she'd be up for it, and she didn't have to think twice to say, "Yes." 

The problem with thinking twice is that it expands.  Second thoughts become third thoughts–fourth, and fifth thoughts.  Before you know it, the mind is filled with thoughts and the will is left with nothing.  Opportunities move much faster than these thoughts.  Indeed, the only way to keep pace is to have faith in one's abilities. 

For Kerri, like most children and young adults, that faith begins with encouragement at home.  Though she credits "just watching TV and soaking up a lot of useless trivia" as part of her success on the show, there is more to it.  It was Regan's aunt and grandmother who first suggested she go on the show, but she also watched regularly with her mom.  And her brother.  Oh–and in the weeks leading up to her appearance, her father would call her from his job as a firefighter and go through the day's trivia questions with her.  Her Braille teacher of 13 years, Judi Ross, was so proud when she heard Kerri was to be on Jeopardy! that she immediately emailed her teacher listserv with the news.  This kind of diversified and continuous encouragement leads to don't-think-twice confidence.

This network of support goes far beyond a half hour daily trivia session (though the value of half an hour every day practicing anything is not to be underestimated).  Regan can at least partially attribute her success to continual involvement in organizations that provide resources and networks of support.  Involvement is a family trait: Kerri's mother was instrumental in the development of the NFB Long Island Parents Division.  So when Kerri went on Jeopardy!, she had not only the faithful eyes of her family watching, but also the NFB, the Guide Dog Foundation, and Recording for the Blind & Dyslexic (RFB&D).  Kerri uses resources from these organizations as well as the National Library Service every day to minimize blindness to the level of a physical nuisance. 

Indeed, Kerri has never made a big fuss out of her blindness, an action that by its very nature is a demand for equality.  When the school year starts out with an autobiography exercise, points out Kerri's Braille teacher Judi Ross, Kerri mentions that she loves to read, likes trivia, and sings in the choir–but not that she's blind.  By dealing with such exercises in this way, Kerri doesn't let blindness define her.  As Ross says, "[to Kerri] it's just like being tall or having brown hair."

"There might be some people out there watching who thought, 'Wow, I could never be on Jeopardy!' But you can.  You just have to go out there and try new things.  Work on your mobility skills and your reading, especially, and you can do anything you want," Regan told me.

Kerri lives these words and takes challenges in stride.  When her AP Government textbook failed to be Brailled this year, she relied on self-advocacy skills she learned through her teacher, Judi Ross, her parents, and her NFB involvement.  Thinking quickly and creatively, Kerri capitalized on her classmates' need for community service hours.  She asked Honor

Society members to volunteer to record chapters of the textbook on tape.  The hours counted toward their Honor Society memberships and Kerri could read her text independently.  It was truly a win-win situation, with some peer education about blindness thrown in for good measure.

The benchmark of independence is the freedom and will to take advantage of opportunities without thinking twice.  This independence might not take your child to Jeopardy!, but it should take them somewhere they are excited about going.  Kerri says, "It is so important for parents to encourage their kids to do whatever they want."  A good education in the skills of blindness can make this "doing" possible.  Such an education lets the child's strengths flourish, like Kerri's penchant for "soaking up trivia."  It's not that Kerri's good education got her on to Jeopardy!, but rather, it let her build strengths and pursue interests without blindness stopping her to think twice.


Interview With a Sophomore

by Judi Ross

Reprinted from the D.V.I. Quarterly, Spring 2003, Volume 48, Number 3.

Editor's Note: This is, for reasons that will soon be obvious, a companion article to the preceding one about Kerri Regan's debut on Jeopardy. In this interview conducted two years ago, Judi Ross, a teacher of the visually impaired (TVI) from Long Island, New York, sheds more light on the background that helped Kerri develop the skills and confidence to make a successful bid to get on the Jeopardy! show. Here is what Ms. Ross says:

The following interview took place between Kerri R and me. I have been Kerri's itinerant teacher for several years. Kerri is a young lady who is totally blind. She has been integrated in mainstream classes since preschool and is now a sophomore in high school enrolled in college preparatory classes. I would like to share Kerri's thoughts with other teacher's of the visually impaired (TVIs) or with those preparing to be TVIs, in the hope that knowing her views will help us all to better serve our students:

TVI: What is the toughest part of school for you?

Kerri: It's hard to get to know many people in a big school. Trying to keep up with all the work and different subjects is hard. Content is difficult if it involves graphing or diagrams to read or create. It's also hard to remember so much.

TVI: What is the easiest part of school for you?

Kerri: Lunch, because there is no work to do!

TVI: What is your most difficult subject?

Kerri: Math, because there is so much to memorize. Teachers have so many different approaches. It's hard to figure out what they mean. There are so many diagrams and things are arranged in different ways. They do so much work on the board and they don't explain how things are supposed to be written and lined up.

TVI: What is your easiest subject?

Kerri: Anything that has just reading, like English or history. It is much easier to follow along.

TVI: How has the role of the itinerant teacher changed since you started school?

Kerri: When I started school my TVI had to teach me how to read and write and learn practically everything. Now she does more transcribing so I can have my materials ready for me when my classroom teachers use them.

TVI: What problems do you identify that teachers may overlook?

Kerri: Some TVIs focus too much on adaptive skills and not enough on academic skills. As a student, I am trying to keep up with my classmates and getting my work done. In high school, I get homework in every subject and I really want to understand what my teachers are going to test me on. Classroom teachers don't realize how important it is to get work [teacher prepared materials] in on time [to the TVI] so it can be Brailled. When teachers give notes or oral quizzes they move very fast. Sometimes it takes longer to Braille answers and I have trouble keeping pace. They often fail to describe what they are writing on the board. It could help if they gave a copy of their notes to my TVI so she could have diagrams ready for me and then I could refer to them in class. Classroom teachers should explain their routines, like how they inform students of homework assignments.

TVI: How does the TVI help you?

Kerri: When I was younger my TVI taught me how to read and write Braille, keyboarding and computer skills, and how to use a calculator. Now she helps me understand difficult subjects and solve problems in school. She is a liaison between me and the staff in my high school including teachers and administrators.

TVI: How does the TVI hinder you?

Kerri: A student can become too dependent on the support. It is easy to get lazy. It is important for me to learn to advocate for myself.

TVI: Do you prefer having the same TVI or would you prefer frequent changes?

Kerri: It is hard for a kid to get bounced around from teacher to teacher. They have different styles and methods. Lots of time is wasted getting to know what each other knows. When your TVI knows what you can do, she can help you explain it to the classroom teachers. Otherwise it takes a while to get them to understand that a blind kid can do the work they assign.

TVI: In your opinion, what are the three most important qualities of a good TVI?

Kerri: First they should be very creative. They need to come up with solutions to solving problems, making manipulatives, and describing unusual material. Second, they should be flexible. They need to be open to different styles of learning and different styles of teaching. Third, they need to be patient. It can take awhile for students to pick things up. Sometimes they must do things over and over.

TVI: What kind of work environment do you prefer?

Kerri: Both push-in and pull-out have advantages and disadvantages. Pull-out is hard because you are always concerned about what you are missing. Push-in may help teachers and other students learn about alternative methods. However, it may be hard to concentrate on work when two teachers are teaching. The ideal is to pull students out during minor subjects or free time, but it isn't good to extend the school day because then students miss out on extra-curricular or social opportunities.

TVI: List the three most important skills you learned.

Kerri: Reading, writing, and computer skills. I'm glad I had the basics of reading and writing Braille as early as kindergarten, when my classmates were also learning the same things. You must know how to read. It opens so many doors. I started keyboarding as early as my little fingers would reach on the keyboard. That was in first grade. Knowing all these things early helped me focus on subjects and content.

TVI: What specific skills does your TVI need?

Kerri: She needs proficient Braille skills. I now read literary, math, music, foreign language, and chemistry Braille. She also has to be up-to-date in technology. This makes it possible for her to teach her student as well as transcribe Braille more quickly and accurately. It also is important for her to have knowledge of the subjects. She should at least know the basics of the subjects I am studying to be able to explain things. She needs to be resourceful so she will know where to get information.

TVI: What are some qualities of your present TVI that you like?

Kerri: I like that we have been together for a long time. We know each other well and she makes me do things for myself. She is very patient and persistent. We go over things again and again until I learn them. She tries to get everything for me in Braille so I can participate in class just like everyone else. She is very well prepared.

TVI: What are some qualities of your present TVI that you dislike?

Kerri: It gets boring when we do things over and over. She gives me so much individual attention that she won't let me goof off or give up. Sometimes I just don't feel like doing my best but she keeps at me.

TVI: How important is it for your TVI to have knowledge of the subjects you are studying?

Kerri: Very! Teachers don't always know how to explain things to a blind person. It can be especially helpful in my weakest or special areas including math, science, music, and foreign language.

TVI: What are some of the biggest problems you encounter?

Kerri: Teachers getting their work [hand-out materials] in on time so it can be Brailled for me, and teachers who have no idea how to work with a blind student. They can't just write on the board.

TVI: What frustrates you the most?

Kerri: Not having my books and therefore not being able to follow along. People think it's okay to just read things to me but then I don't get to see the spelling or grammar and I have to remember so much.

TVI: What do you want TVIs to know about working with a blind child in a mainstream classroom?

Kerri: They should try to be as invisible as possible to the other kids. It is hard to be labeled as one who needs special help. Don't pull students out of class or especially lunch. Kids must socialize and we need time to relax during the day. Make sure to tell teachers to plan ahead so they can get the work [their hand-out materials] in on time so I can get it in Braille when the other kids get their copies in print. PLEASE!

TVI: What gives you the greatest satisfaction?

Kerri: Doing the same things everyone else does. I have achieved honor roll and plan to go to college to pursue a career that involves writing.


Beyond Textbooks on Time:

Is the Battle for Braille Literacy Over?

by Mark Riccobono

[PHOTO Mark Riccobono (2004)]

Mark Riccobono

In the September 1987, issue of the Braille Monitor, Dr. Kenneth Jernigan, preeminent leader of the blind and advocate for Braille literacy, responded to a letter which suggested that technology would bring a certain end to the Braille code. Dr. Jernigan wrote in part:


"So it may be with Braille–but the jury is still out. As is so often the case, we stand at a crossroads. Braille can either slide into oblivion, or it can become more usable and flexible than ever before in history. The decision is ours, and the time is now. I think the question will be settled during the next five to ten years. For my part I think it will be a tragedy if we permit Braille to become an anachronism. I say this knowing that many of the sighted educators of blind children (not being able to use Braille themselves, being too lazy to learn it, and having all kinds of psychological hangups about it) want to see it disappear–or, at the very least, diminish very greatly in use and importance. They are not the ones primarily affected. We are. Therefore, we are the ones who should have the major voice in determining what will happen."

Dr. Jernigan's sentiments may be considered harsh if measured against the feelings toward Braille in the field of blindness today. However, they are an accurate reflection of the frustration the blind and many parents of blind children of the 1980s felt about the lack of quality Braille instruction available to blind youth. And, the blind did indeed determine what should happen to Braille within the ten-year period Dr. Jernigan predicted.

In the late 1980s and early 1990s, the National Federation of the Blind waged what can only be described as an all-out assault on Braille illiteracy. The Federation's war for Braille literacy had four major components:

1. Ensuring the right of every blind child to read and write at levels commensurate with their sighted peers through the establishment of Braille as the default learning-medium for blind and visually impaired students.

2. Establishing a greater level of Braille competency among the teachers charged with educating blind children.

3. Educating the public about the Braille literacy crisis.

4. Ensuring the timely delivery of textbooks in Braille by encouraging publishers to participate in the process of textbook accessibility.

In looking at this list, can we say the war for Braille literacy is over? Have we reached our objectives? Can we now sit back and enjoy the fruit of our success? Let's briefly examine each point.

The Right to Braille Instruction: The Federation began to bring national focus to the Braille literacy crisis in the late 1980s. In 1989, the Federation proposed a unified effort within the field of blindness regarding Braille at the first meeting of the Committee on Joint Organizational Effort (JOE) held at the National Center for the Blind. Unfortunately, despite the promulgation of an initial statement, crafted at the JOE meeting, which affirmed the value of Braille and the right of blind children to have it, disagreement and contention around Braille persisted into the 1990s. While efforts continued toward getting an agreement that all members of the JOE could support, the federation proceeded to create a model Braille bill and urged its adoption in each state. (To read the model legislation go to <http://www.nfb.org/modelbrl1.htm>.) Although much progress was made–32 states eventually adopted Braille legislation–it was evident that more aggressive action at the federal level was required.

At the 1994 NFB Washington seminar, the Federation made a federal Braille literacy law one of the key objectives in its legislative agenda. The vehicle for the legislation was the reauthorization of the Individuals with Disabilities Education Act (IDEA). While the premise was simple–every child has a fundamental right to literacy–the road to establishing this for blind children was difficult. However, in April of 1994, the organizations participating in the JOE committee finally reached an agreement on language that demonstrated a unified front in the field of blindness around the right to Braille literacy.

Eventually, the Braille provisions were included in the 1997 amendments to IDEA and victory on this point seemed secured. The intent of the IDEA language was to make Braille the default learning-medium for any student who is blind or visually impaired, ensuring that Braille will be taught unless an evaluation by the IEP team determines that Braille is not appropriate. Implementation was, and continues to be, another matter. However, in the final analysis one thing is clear: Braille is firmly planted in IDEA '97 and there is no need for debate about Braille instruction. It is in the law, it is the right thing to do, and there are fewer and fewer excuses for not providing Braille instruction.

Teacher Competency: Central to the discussion about Braille literacy was a growing concern about the level of Braille competency among educators of blind children. As the issue was debated and solutions sought, interest began to grow in establishing a national Braille competency exam. The JOE committee endorsed the concept and requested that the National Library Service for the Blind and Physically Handicapped of the Library of Congress develop it and establish procedures for its administration. The national Braille competency requirement was met with vigorous opposition in many states. Nevertheless, the action brought results in other ways. Many of the university programs that prepare individuals to be teachers of blind students increased their focus on Braille competency and aggressively took steps to promote more positive attitudes about Braille in their students. While a number of issues have prevented wide spread adoption of the Braille competency exam (this is beyond the scope of the present article), the evidence demonstrates that these efforts triggered considerable momentum for raising the bar for Braille competency among educators.

Public Education: The Federation took an aggressive and creative approach toward educating the public, including the field of blindness, about the critical role of Braille and the great barrier that illiteracy places on the blind. The Federation's efforts to raise awareness through speeches, conventions, distribution of literature, the development and dissemination of the video "That the Blind May Read," creation of the "Braille is Beautiful" curriculum, and the promotion of Braille legislation in every state brought considerable focus to the crisis and turned attitudes about Braille in a new and positive direction. To be sure, the establishment of the National Association to Promote the Use of Braille (NAPUB) and the National Organization of Parents of Blind Children's (NOPBC) twenty plus year history of offering the Braille Readers Are Leaders Program, also made significant contributions toward improving attitudes about Braille.

The strongest evidence of this attitudinal shift is the Braille enthusiasm that is prevalent in the field of blindness. The greater availability of free or affordable Braille storybooks, innovative programs like the American Foundation for the Blind's "Braille Bug," and the establishment of more and more contests focused on Braille competency, are all examples that Braille is more fervently supported than any other time in its rocky history.

Timely Textbooks: The effort to secure textbooks in an accessible format in a timely manner has consumed the bulk of the Braille literacy effort since the adoption of the IDEA '97 amendments. Finally, with the 2004 reauthorization of IDEA, the long fought-for provisions to ensure that textbooks are delivered on time have been put into the law. (The long road to ensuring "textbooks-on-time" is reviewed elsewhere in this issue.) While there are bound to be bumps during the implementation of these new provisions, we can say with confidence that one more significant barrier to Braille literacy has fallen thanks to the NFB and other supporters of the initiative within the field of blindness and the publishing industry. The excuse that it is too hard, too expensive, and takes too long to produce Braille books will soon be a thing of the past.

In this brief examination of our accomplishments in the Braille literacy efforts over the past twenty years, one is tempted to view Dr. Jernigan's letter of September 1987 as a foregone conclusion. However, the Braille literacy crisis was anything but predictable; it took concentrated effort to change the trends and bring us to where we are today. Yet, Dr. Jernigan had no doubt about our ability to achieve this end, he also wrote in his letter, "I have no doubt what we will decide and what we will do. Braille is not only here to stay but also in the early stages of a renaissance. I am convinced that by the time the twenty-first century is well under way, we will look back with a smile at those who said that Braille was finished." This statement is true but we are still left with the question, "Have we achieved our goals? Is the Braille literacy crisis over?"

I suggest that the toughest battle still lies ahead. The laws are clear, attitudes have shifted in favor of Braille (at least in the blindness field), but too many blind children in America are not receiving early, adequate Braille instruction. This is so despite the fact that recent research confirms that Braille literacy is critical for achievement and competitive employment. This is especially true for children whose residual vision is over-utilized and, thus, their potential is under-realized. In the 1990's, Dr. Ruby Ryles conducted groundbreaking research studies on Braille literacy. The studies led to the inescapable conclusion that "low-vision kids need to be taught Braille…" and that "early Braille education is crucial to literacy, and literacy is crucial to employment." ("New Research Study: Early Braille Education Vital in Establishing Lifelong Literacy," Future Reflections, volume 18, number 2, Summer/Fall, 1991.)

There is a significant gap between policy and practice related to the education of blind children. Few young blind children are receiving Braille instruction that is commensurate with the reading instruction that sighted peers receive. Isn't Braille literacy the same as reading, shouldn't the two be equal? Likewise, only very recent innovative efforts have begun to establish standards for Braille reading literacy skills. The goal of the No Child Left Behind act is to raise the bar of academic performance and establish accountability for performance for all children. Shouldn't we have a standard expectation for reading in Braille as we do in print? At least one state has made progress in this area. To learn more about California's innovative creation of Braille reading standards, go to <http://www.cde.ca.gov/sp/se/as/ab2326.asp>.

Yet, California is an exception, not a rule. There is a chronic struggle in local school districts throughout the country to get an appropriate frequency and amount of Braille instruction into the individual education plan (IEP), and then to ensure that the instruction is carried out. Many problems and circumstances–a lack of qualified teachers of blind students, a lack of understanding about Braille, and a long list of core and expanded-core curricular skills to be learned–make the effort to receive appropriate Braille literacy instruction a constant balancing act.


Which is all the more reason we must begin to bring focus to the practical problem of getting timely Braille instruction to blind youth. Braille instruction need not be spread over many years if we find a way to provide an appropriate level at the front end. Advocates, parents, and educators need to come together to find an innovative solution to this puzzling problem. We have been successful in establishing the policies to ensure that need "could" be met. Now we need to develop the practice that will guarantee the need "will" be met. The excitement over our recent victory with IDEA 2004 should be channeled into a collective effort to develop innovative ways of increasing and improving the quantity and quality of Braille instruction to blind youth. As the capacity to deliver textbooks on time is put into place, we need to ensure that blind youth can read those textbooks with fluency, comprehension, and speed.

How can we increase Braille instruction in schools? How can we better prepare parents to reinforce Braille skills at home? What role can Braille advocates and blind, Braille literate adults play in improving instruction? How do we go beyond policy into effective practices with the resources available to us? These are all questions that need answers, now.

The National Federation of the Blind Jernigan Institute intends to be at the forefront of developing practical solutions to these questions, and we invite you to participate in that discussion. We recognize that pockets of innovation, as evidenced by the California standards, exist across the country. The first step to developing a nationwide solution is to stop reinventing the wheel, that is, to bring all of the innovative strategies to a central place. When we have a good picture of the approaches that are working, we can craft a model to disseminate across the country. This is the leadership role of the NFB Jernigan Institute.

We encourage you to send us articles, reports, descriptions, curriculums, and other materials about innovative and effective models for delivering Braille instruction and increasing early Braille literacy. Once we have this information, we can bring together leaders in the field to discuss the strengths and weaknesses in current approaches to Braille instruction in order to stimulate development of a national model for Braille excellence. This model will leverage the policy and attitude shifts we have brought about and will help bring Braille to children earlier and more effectively. No, the Braille literacy campaign is not coming to an end. In many ways the most important stretch awaits us. We can feel confident that another of Dr. Jernigan's dreams, the research and training institute he challenged us to establish before his death, will lead the way in completing the final steps of this important journey. Through the NFB Jernigan Institute, and with your help, the day is coming when no blind child will be left unable to read the Braille books that await him or her on the first day of school. v

Please send materials, descriptions, and first hand stories about innovative models for Braille instruction and early Braille literacy to:

Mark A. Riccobono

Manager of Education Programs

Jernigan Institute

National Federation of the Blind

1800 Johnson Street

Baltimore, Maryland 21230

Phone: (410) 659-9314, extension 2368

Email: [email protected]

Who Can We Share This With?

Parent Support Groups Fill A Void

by Donna Labarre

[PHOTO Scott Labarre (2004)]

Scott Labarre chairs the annual meeting of the Blind Lawyers Division of the NFB.

Editor's Note: Several years ago, Donna Labarre, mother of a successful blind attorney, gave a speech about the benefits of a parent's organization–and why she wishes one had been around for her when her blind son, Scott, was growing up. Today, of course, we have the National Organization of Parents of Blind Children (NOPBC) with formal parent divisions in over two-dozen states and informal parent networks throughout all regions. Our means of contact for support includes the Internet in addition to face-to-face meetings and the telephone. However, to gain the benefits of this support, families have to reach out for it, make time for it, and give back as well take. With so many things competing for our time and attention, families naturally have to ask: is it worth it? Here is what Donna Labarre has to say about her experiences in raising a blind son, the value of parent support groups, and, in particular, the value of the National Federation of the Blind:

Good Morning Everyone! When I was first asked if I would speak here today, my immediate impulse was to say "No way! Not me. I'm not the speaker in the Labarre family!" For those of you here who know my son Scott, you are very aware that he is never at a loss for words. (I still believe he was born with a microphone in his mouth.) But, when Judy Sanders informed me that the main topic was the forming of a parent support group, I decided to say yes. I think a parent support group will fulfill a very important void. When Judy called and asked me for a title, (I hadn't started my speech yet) she helped me with one. But, now that the speech is written, I would like to change my title to: Who Could We (as Parents) Share This With?

The federal law to mainstream disabled students was passed in 1975 [now called the IDEA]. Our son Scott went totally blind, at age ten, in 1978. This law meant to our family that we were eligible for many programs that helped Scott stay in a normal classroom system as he adapted to his blindness and throughout his whole education process. These services included teachers of the visually impaired, mobility teachers, physical education teachers, and an evaluation plan to monitor the progress of the student. (It boggles my mind to think of what a blind student had to go through before that law was passed.)

Right after Scott became blind, something became apparent to my husband and me. We had professional people, such as counselors and teachers, that could answer and help find solutions to questions regarding Scott's educational needs, but where and who could we turn to when we had questions regarding personal and social needs? You can imagine our fears about what kind of future our son would have. Our family never knew any blind people before this happened to us. Who could we (as parents) share this with?

As many of you know, through ignorance and lack of information, society can be cruel. Scott was the first disabled student to be mainstreamed at his school. He was sighted during his first four grades, so it was a hard adjustment for everyone. After he became blind, one of Scott's teachers started assigning a fellow student to take him out at recess. Parents called me at home stating that they didn't feel that their child should have to do this because it interfered with their child's life. Some of the students became very jealous from all the attention that Scott was getting. He had his own special teacher and equipment. In a way I could understand their concerns, but I really felt hurt and isolated. Who could we (as parents) share this with?

The first summer after Scott went blind, we were told that it might be a good idea to enroll him at the Faribault School for the Blind for the summer program. The rational was that the summer class would help him keep his Braille lessons up, give him a chance to learn new skills, and give him experience being around other blind kids. We did not know that much about the school or any of the blind students, but we decided to send him anyway. Many of the students went to the school year-round, most were blind from birth, and all of them were pretty well-adapted to their blindness. On the other hand, Scott was newly blinded, had very little training in blindness skills of any kind, and he didn't know any of the other students. He ended up feeling alone and isolated from his fellow students at the school. All in all, that summer wasn't quite the experience we all had hoped for. Who could we (as parents) share this with?

For many years our family and five other families would go to a resort on a lake for one week in the summer. We all had a wonderful time and the children had many things to do. After Scott went blind, things completely changed. Scott was now "different" from the others, and was left alone most of the time. He couldn't play the jukebox, play pool, or do the fun things with them any more. He just couldn't keep up with them. These were friends that knew us so well, but they didn't understand. Who could we (as parents) share this with?

Finally, through his teacher of the visually impaired, Scott was able to meet other blind kids. The teacher, under law, could not give a list of names and numbers out, but could introduce Scott to other blind students. Through this method, once in a while, I was able to talk to a parent of a blind child. When I did, I had a lot of questions and got some very good tips and some support. The only problem was that this didn't happen very often.

Thankfully, there were different opportunities of which Scott was able to take advantage. He ordered a lot of talking books from the Faribault Library. That was a wonderful service. At first, this service mainly served for passing the time as he adjusted. But after awhile, Scott really began to enjoy reading. This has turned out to be a wonderful asset to him.

Through Courage Center, Scott was introduced to the world of ham radio. They sent volunteers to the house and trained him until he received his license. Scott met many blind and sighted people interested in ham radio, and he attended many different camps at Camp Courage.

When Scott was in high school he went through a summer work experience program that was very helpful in preparing him for college. He not only received training on how to hire readers, but other skills necessary for being away from home. The greatest opportunity of all, however, was when he became acquainted with the National Federation of the Blind (NFB).

Academically, Scott did very well in high school. During his senior year he applied to and was accepted at St. John's University in Collegeville. He also applied for different college scholarships, and one was from the NFB. The NFB scholarship procedure is very unique. If an applicant is selected to receive a scholarship, the NFB pays for the applicant to attend the NFB annual convention held during the summer. At the convention, the competition process continues over several days of interviews and screening. There are many awards of different value. If I remember correctly, the scholarship amounts that year ranged from $1,800 to the top award of $10,000.

Scott's application was accepted, and in July we took him to the airport to fly to Kansas City where the convention was being held. As we began to say goodbye and wish him well, his words to us were "Don't be too surprised, but I'm going to win the biggest scholarship." He was very optimistic! It was just a coincidence, but the final decision was announced at the banquet, which happened to be held on Scott's birthday. We received a phone call that evening and Scott informed us he didn't win the big one but he did win the second biggest one, a $4,000 scholarship. The money was greatly appreciated for his first year at college.

But in reality, it wasn't the monetary prize that Scott received that summer from the NFB that became so beneficial to his life. He was so impressed with what he saw and learned at the convention that he decided to join the organization immediately. The many different blind people he met became positive role models for him. He started believing in himself, and the NFB gave him a whole new outlook on his blindness. Then he got active in the NFB. First, he became a member of the Minnesota Chapter of the NFB Student Division, then became the president of the Minnesota Chapter of the NFB Student Division, and then became the president of the National Federation of the Blind Student Division. [Today, he is the president of the National Association of Blind Lawyers, a division of the NFB.]

Scott hasn't missed the NFB's national convention since he received the scholarship that summer. (The convention always happens to fall around his birthday every year; this has saved us a lot of birthday gifts.)

Scott graduated "magna cum laude" from St. John's University and went on to attend law school at the University of Minnesota, where he made the dean's list. He is currently employed [in his own law practice, is married, and has two beautiful children.] You can imagine how very proud we are of him. He has come a long way from the time that he went blind at age ten.

We are very fortunate to live in a country where programs are available that help prepare our children to accomplish their goals and achieve the future they desire. I realize that many people and organizations (especially the National Federation of the Blind) have paved the way and have worked very hard for these laws, services, and programs; and I am very thankful for that.

But, as you can see from the experiences I have mentioned, there was a void for us as our son adapted to his blindness. Not the void of educational programs or services, but the void of support from other parents. I have since discovered that a lot of parents of adult blind children were as anxious as I was to talk about their experiences when their children were growing up. How nice it is to be able to share with other parents, in a large or small way, the things that can be so helpful in everyday life.

That's why I think, even though my son is grown, that it is essential to support the NFB in getting parent support groups started. A parent support group would have been a wonderful program for my husband and me when our son went blind, and would have answered the question, Who could we (as parents) share this with? Thank you.


A Girl's Best Friend is Back!

by Barbara Cheadle, President

National Organization of Parents of Blind Children (NOPBC)

The NOPBC is pleased to announce that the delightful book, A Girl's Best Friend, (ages 8-12) by award-winning author, Harriet May Savitz, has been reissued and is, once again, available for sale online at <www.iuniverse.com/>.  An original Apple Paperback/Scholastic Books, A Girl's Best Friend is an engaging book with a realistic blind character. For that alone, I am happy to see it back.

But I have another reason to be glad: the author has arranged for a portion of the proceeds from the reissued book to be donated to the National Organization of Parents of Blind Children, a Division of the National Federation of the Blind. What a deal! With one purchase, you can give an entertaining gift, educate a child about blindness, and help fund the work of the NOPBC. Personally, I plan to buy several copies as gifts for my niece and nephews and other special children in my life.

In regard to alternative formats, the book has been Brailled and tape-recorded by the Library of Congress, Library for the Blind and Physically Handicapped system. Copies, therefore, should still be available through your regional library for the blind. However, my library had the title listed as Girl's Best Friend, but it was the same book.

Here is an excerpt of a description of the book written by Peggy Chong who reviewed the book in 1997 for Future Reflections and the Minnesota Bulletin:

"…The story centers on Laurie, a 12-year-old blind girl and her dog. No, not her guide dog, the family dog, who is getting old and may have to be put to sleep. Laurie is normal 12-year-old, with all the problems, hopes, and dreams of any child that age…Laurie uses a white cane, writes letters to her grandmother (with her slate and stylus), roller skates, and walks her dog just like the other kids in her neighborhood. She also has problems in her new school with a substitute teacher who does not understand how to treat the blind student….The book shows how, for those who are blind, attitudes about blindness play an important part in the success of everything in life. Laurie has to work through her own attitudes about herself when others treat her differently because she is blind…I plan to give each of my nieces a copy of the book for Christmas. It will help the younger members of our family grow up with a better philosophy about blind people."


Title: A Girl's Best Friend

Price: $8.95

Size: 5X8

Pages: 114

ISBN: 0-595-33944-1

Published: December 2004

International orders: call 00-1-402-323-7800


Finally, A Book to Help Parents of Disabled

by Helen Henderson

[PHOTO Deborah Kent Stein (2001)]

Deborah Kent Stein

Reprinted courtesy of Torstar Syndication Services from the Toronto Star, April 17, 2004.

Editor's Note: The book reviewed in the article below contains an essay by Debbie Stein (or Kent-Stein), a well-known author of children's book who happens to be blind. The essay is based upon a speech Ms. Stein gave to parents of blind children at a National Federation of the Blind sponsored workshop. As a representative of the NFB of Illinois, Ms. Stein does extensive volunteer and advocacy work with parents of blind children in her community. Here is the review:

What will happen when my child grows up? Will she be happy? Will he have friends? Will he be able to achieve his dreams? What can I as a parent do to give her the best chance in life? Most moms and dads, even first-timers, need only look at the experience of friends and neighbors for ideas on the future. But the parents of children with disabilities usually have no such yardsticks.

They've probably been overwhelmed with a bunch of medical prognoses, which may or may not shed any real light on what to expect. Their kids have been labeled "different." A lot of their time and energy will be consumed in trying to get society to see beyond the disabilities to the abilities they know are there. They could use the advice of someone who's traveled ahead of them, but don't know where to begin to look.

Well, this week I met a whole army of bright, wonderful grown-ups more than willing to help. They jumped off the pages of a new book: Reflections From A Different Journey: What Adults With Disabilities Want All Parents to Know, edited by Stanley D. Klein, Ph.D., and John D. Kemp (McGraw-Hill Ryerson, $27.95).

They cope with all manner of disabilities, physical and mental. And their stories make up a joyous, life-affirming guide to possibilities. As actor Marlee Matlin puts it in the introduction: "They are not people who have 'overcome' their disabilities. Rather, they have overcome the prejudices of society that all too often stereotype people with disabilities in destructive ways....

"With the love and support of their parents, they were not imprisoned by dire prognoses. Instead, they were encouraged to dream, to try, to make mistakes, to be active participants in the life of their families and communities, and to reject the limitations suggested by scientific and clinical stereotypes."

Matlin herself continues to work as a successful actor, despite being told at age 21 that she had been given an Academy Award for her role in the film Children of a Lesser God only out of pity because she is deaf. "Our essay writers are relatively ordinary, accomplished individuals; they are not superstars," she notes. "All too often, the media focus on the relatively few individuals who happen to have disabilities who do extraordinary things. The result is a different kind of prejudice: people with disabilities are to be superstars."

The contributors to the book come from all over the world, including Canada. Many speak of their appreciation for parents who provided unconditional love and accepted them as whole people including that part of them considered a disability.

Among these is Gregor Wolbring, whose physical self was shaped in the womb by the drug thalidomide. "The public perception was that parents of thalidomiders had it very hard because their kids were indeed seen as monsters," writes Wolbring, a biochemist at the University of Calgary, an adjunct professor of bioethics and a vocal advocate for disability rights.

Thanks to his parents' love and acceptance, "I developed high self-esteem and was able to become comfortable with my non-mainstream body and with who I am," he says. "I never felt ashamed about crawling. For me, it was and still is my Natural way of moving.... I never saw myself as defective. My parents always helped me to look at the bigger picture. They made me aware that I was not the only one bullies would target. They enabled me to cope with the bad treatment I sometimes received."

In the chapter on sexuality, Anne Abbott, a Toronto writer and graphic artist, writes: "I felt terribly confused and inadequate during my teenage years. Unwittingly, my mother added to those feelings by (telling)...me to try not to become romantically interested in able-bodied boys because they would never want the responsibility of taking care of someone with cerebral palsy.... My mother wasn't trying to hurt me; she just wanted to save me from rejection."

Abbott, who does not speak, says she was indeed "rejected by both able-bodied boys and boys with disabilities." Finally, at age 29, when "I was resigned that I would die an old maid, a virgin forever, without a mate," she met Rob, an able-bodied man who saw beyond her disability. They have been married for seven years.

"Rob has taught me that if you want something badly enough, one day you just might get it," she writes. "Just never give up hope or be afraid to take chances."

Then there's Ross Flood, who has cerebral palsy and whose essay begins the book. Flood's parents were told he would be a vegetable. He was placed in a sheltered workshop, labeled "unemployable" and turfed out. Then, his dad encouraged him to start writing about rugby. Today, at 51, he has a B.A. in sociology from Auckland University, works as a copywriter and is on New Zealand's Para Olympic bocce ball team. As he puts it: "I ain't done too badly for a cauliflower."


Ways to Increase Independence

Tips from a Preschool O&M Instructor

by Sandra Stirnweis

Editor's Note: Ms. Stirnweis is an orientation and mobility specialist who has provided instruction to preschoolers since 1986. She works at the Foundation for Blind Children (FBC) in Phoenix, Arizona. The FBC was founded in 1952 by parents and, according to Stirnweis, "continues to be driven by parent and family input." Stirnweis has presented at a variety of conferences locally, nationally, and internationally. She can be contacted at <[email protected]>.

Use concrete directional language. Most people communicate through gestures and non-descript directional phrases such as "over there." You need to communicate with words the parts that others leave out because they assume it can be seen. For example, "As you go down the hallway, the drinking fountain is on the right, just past the second door."

Be descriptive. The more your child knows about the world, the more prepared, comfortable, and self-confident he will be. Talk about it. Describe the items located in the aisle you are shopping in. Tell them how the neighbors have decorated their homes for a particular holiday. Explain what people are wearing or how their hair is styled. Put names to the things you feel, touch, and smell. Make it a part of the "down-time" conversation in the same way you would people watch. For example, when you are in a fast food restaurant talk about the décor or what the latest fashions are while you're eating.

Show them the world is not one-dimensional. Whatever objects you have in your home, the child will think everyone has the same ones. Go to the local department or hardware store and explore the various kinds of stoves and refrigerators, or sinks and toilets. Go for a walk in the neighborhood and explore the different kinds of mailboxes, fences, walls, trees, and bushes.

Don't be too structured. Although organization is very important, in order to get along in life you have to be able to go with the flow from time to time. Vary the daily routine occasionally; do things on the spur of the moment, or change your plans. These simple things will help your child develop flexibility, be less egocentric, and become a better problem solver.

Be comfortable with the tools of the trade. Your child may have various tools (cane, magnifiers, absorptive lenses, etc.) to make them more effective and safe travelers. However, when they use those tools there is no mistaking to the general public that they have a vision problem. Do not let your own discomfort get in the way of your child's desire for, and comfort in, using these tools. Ask to borrow an old cane and walk the streets with it; try to locate a street sign with the monocular. You will not only increase your  own comfort level but you will also have a better understanding of how the tools work and why your child uses them. If this continues to be difficult for you, talk to a counselor or a support group.

Attend lessons. You will not know what skills your child has, or what techniques he uses to travel, unless you are a part of the process. If it's not possible to attend lessons because of scheduling, ask for the lessons to be videotaped and set up a time when you can watch them with the instructor so she can explain to you what your child is doing. The more you know, the more comfortable you'll be.

Independence is not isolation. Being independent means being in control. When your child is independent, she will be able to decide what she can do for herself and what she needs help with. In the home, have her be a helper around the house. Share with her things that happened in your day when you needed help. Use peers and your own childhood as a guide for the types of things your child should be doing independently. Praise her when she learns a new skill and allow her the opportunity to use it on a regular basis. Mobility isn't just for lessons; it's for every day.


The Cane and I

by Judy Sanders

[PHOTO Judy Sanders (2004)]

Judy Sanders

Reprinted from the Summer 2003 issue of the Minnesota Bulletin, a publication of the NFB of Minnesota.

It all began when I was ten. It should have started a lot earlier but that's easy to say now.

When my parents discovered that their baby twins were blind they were devastated. What kind of future could they envision for their children? To find out, they began looking for blind adults from whom they could learn. They found two sources: a sheltered workshop that gave blind adults very limited opportunities for employment and a blind bowling league. They volunteered to drive people to the bowling alley. Unfortunately, they did not learn much about what the future could hold.

My parents were practical people; they realized the importance of allowing us to explore our environment. The first thing to go was the playpen. We were encouraged to move around the floor and see what we could find. I am told that I never crawled; I scooted everywhere.

It was later that they started investigating our choices for a good education. In the 1950's most blind children were educated at schools for the blind. We were given a good foundation in reading and writing Braille and in other academics; however, no attention was given to teaching us how to travel from place to place safely and independently; that is, until I was ten.

We learned about inside safety. Trailing the walls and holding our hands in front of our faces for protection from overhead objects was the first lesson. We all felt ridiculous hiding our faces so we never used this technique except during our lessons when we had no choice. To this day, I have not met a blind person who travels in this manner.

My first cane was a short, crook-handled, aluminum cane. It was heavy and I never relaxed while using it. For one thing, I only used it during lessons; no one made me use it at other times and I was not motivated to do it on my own. In fact, I felt very self-conscious when traveling with this cane. I knew people were staring at me. I knew that some blind people made a living by begging on the streets and I had heard that they carried tin cups with a picture of a white cane on them; I did not want to be one of those people.

While telling me it was not necessary for me to use my cane when traveling with other sighted people, I was also told I was amazing for what I could accomplish with the cane. My instructor was invited to speak to various civic groups and I remember being asked to demonstrate the cane. I walked from my chair to the edge of the stage and the audience gasped because I stopped just in time to keep from falling into their laps.

Throughout high school and college I used a folding cane and carried a purse big enough to hide it. My college friends would meet me and take me from place to place. I now know that my social life would have been much more satisfying if I had asserted my independence. I would have been equal with my peers.

Upon graduating from college, I was introduced to the National Federation of the Blind. People were talking about going to a national convention in Houston, Texas, and I considered joining them. I weighed the pros and cons of this journey.

Pro: I wanted a teaching career and I knew I would have the chance to meet other blind educators.

Con: I would not know where to go upon arrival.

Pro: I knew several people who were going and I could stick with them; at least, I would not be alone when we got lost.

The pro list won the day and I had the time of my life! I cannot say that I magically transformed myself into an avid cane user but I began thinking. I noticed what little effort it took for blind people to get around this huge hotel. They even left the hotel to explore the city. Why wasn't I doing these things?

In the next few years, I came to know all that the Federation had to offer. My Federation friends have given me far more than I can ever give back. With respect to the cane, I have come to value my freedom to come and go as I please; I can take pride in saying to my sighted friends and colleagues that I will meet them somewhere. I now travel thousands of miles each year alone and don't think twice about it.

Times have changed. Not only do we have an organization for parents of blind children but because of the National Federation of the Blind there are now *adjustment-to-blindness training centers operated by blind people to teach the use of the cane and make the students proud. Blind people are equal partners in today's society and the cane is one reason why.

I now travel with a lightweight, fiberglass cane and it stands straight and tall. My purse is no longer needed to be a cane holder and I can smile at the people who might be staring at me.v

*The NFB operates three adjustment-to-blindness training centers: BLIND, Inc., the Colorado Center for the Blind, and the Louisiana Center for the Blind. All three of the centers also operate summer blindness-skills programs for children and youth. For more information, contact:

BLIND, Inc. (Blindness: Learning in New Dimensions, Incorporated)

Shawn Mayo, Director

100 East 22nd Street South

Minneapolis, Minnesota 55404

Phone: (612) 872-0100 or

(800) 597-9558

Fax: 612-872-9358

[email protected]


Colorado Center for the Blind

Julie Deden, Director

2233 West Shepperd Avenue

Littleton, Colorado 80120

Phone: (303) 778-1130 or

(800) 401-4632

Fax: 303-778-1598

[email protected]

Louisiana Center for the Blind

Pam Allen, Director

101 South Trenton

Ruston, Louisiana 71270

Phone: (318) 251-2891 or

(800) 234-4166

[email protected]


An Introduction to Dr. Lilli Nielsen's Active Learning

by Stacy Shafer

[PHOTO Dr. Lilli Nielsen]

Dr. Lilli Nielsen

Reprinted from VISIONS newsletter, Volume 3, No. 2.

Dr. Lilli Nielsen has worked as special education adviser at Refsnaesskolen, National Institute to Blind and Partially Sighted Children and Youth in Denmark since 1967. She was trained as a preschool teacher and psychologist. She has performed research in the area of spatial relations with infants who are congenitally blind and has written several books and articles about educating children with visual impairments and multiple disabilities. Dr. Nielsen's approach is called Active Learning. She has presented week-long training sessions on developing the full potential of young children with visual impairments and multiple disabilities in countries around the world. We were very fortunate that she presented in Dallas, Texas, May 1994. I was asked to write about some of the information she has shared with us.

All young children learn through play. They need to be encouraged to explore their environment and objects in their environment. Dr. Nielsen believes that all very young children learn by being active, rather than passive recipients of stimulation. We need to observe typical children to see how they learn to move their own bodies (raising their heads, reaching for objects, sitting up, etc.), use their bodies to explore their surroundings (including any and all objects within their surroundings), and actively participate in interactions with other people. A visual impairment prohibits a child from having enough opportunities to develop these abilities and have these experiences without intervention. She encourages the adults to set up the child's environment so that he can do this.

Here are a few of Dr. Nielsen's recommendations when developing the child's environment:

Observe the child. It is imperative that we know what the child can do, what activities s/he enjoys, what type of objects does s/he like, etc. Assessing the child's existing skills and preferences is the first step in programming. Observation will help you note the current developmental skills the child has. A child's preferences are indicators of the underlying strengths of his system. These preferences can guide you in the selection of objects and activities. You need to know a child's repertoire so you can notice change and improvement.

Provide the child with more activities and objects that are similar to those he enjoys. This will encourage the child to explore and experience new things and broaden his knowledge base. Young children with visual impairments need to be encouraged to explore not only toys from the toy store, but also everyday objects around the house.

Give the child opportunities to practice and/or to compare. As adults, we are often tempted to remove materials as soon as the child shows that s/he can use them. We all relate new information to things we already know. For example: the first time you successfully drove a car around the block, you still needed lots more experiences driving in different environments, on different types of roads and highways, different vehicles, different times of the day and night, in different types of traffic, with the radio on and off, with friends in the car, etc., before you really mastered all the skills and concepts about driving. When a child begins to bang one object on another one, he needs to be given the opportunity to bang lots of different objects on lots of different surfaces. (The sound produced when banging a metal spoon on the couch is much different than banging it on the coffee table or a metal mixing bowl.) Children need to be able to repeat an action many, many times in order to learn.

Provide a few materials and activities that are at a slightly higher developmental level to provide a challenge for the child, so he doesn't become bored. You only model these activities for the child. You do not expect him to imitate.

Do not interrupt a child by talking when s/he is actively engaged in play. Most of us have had the experience of talking to an infant who is busily kicking her legs and having the child stop kicking to listen to our voice. When a child is exploring or playing with an object or practicing a new movement, we need to wait to talk with the child about what he was doing until he turns to us to share his experience, or at least until he takes a little break in the activity. This does not mean that we need to

stop talking to our young children with visual impairments, just that we need to pick our moments.

Slow down when interacting with a child. We must be willing to wait and give the child time to take a turn in the interaction. When playing with a child, Dr. Nielsen tells us to give the child time to explore an object alone, rather than jumping in and showing her/him how to use it. At a conference during a child demonstration, Dr. Nielsen offered a battery-operated facial brush to a child. She let him explore the brush in his own way. He held the brush against various body parts, moved it from hand to hand, turned it over, put it on a tray, moved it against other objects on the tray, picked it back up, put it to his lips, and did many other things with it. Then he turned to Dr. Nielsen to share the experience. That was the moment she talked with him about the facial brush and the things he had done while playing with it.

Let the child have control of her/his own hands. Dr. Nielsen feels it is important when we are interacting with a child who has a visual impairment, that we not take her/his hand and bring it to the materials. Instead, we need to develop alternate strategies for presenting objects to the child (e.g., gently touching the toy to the child's arm or leg to alert her/him to the object's presence, making noise with the object to arouse her/his curiosity to encourage her/him to reach out, placing several objects to touch the child's body or very close to it so any movements s/he might make will bring her/his body in contact with an object, etc.)

Dr. Nielsen has developed several pieces of equipment to provide children with visual impairments the opportunities to actively participate with their environment. One of these "special environments" is the "Little Room." The "Little Room" consists of a metal frame supporting three side panels and a Plexiglas ceiling from which a variety of objects are suspended which the child finds interesting and enjoyable. This gives the child the opportunity to experience the properties of objects, to compare different objects, and try out different things to do with the object on his own without adults interpreting that experience for him. Since the objects are stable, it allows the child to repeat his actions with an object as many times as he needs to, at one to two-second intervals, without dropping and losing it. The immediate repetition enables the child to store the information gained from the experiences in his memory.


Nielsen, Lilli. Environmental intervention for visually impaired preschool children with additional disabilities, VIP Newsletter, Vol. 8, No. 3.

Nielsen, Lilli. The blind child's ability to listen, VIP Newsletter, Vol. 10, No. 3.

Nielsen, Lilli. Active learning, VIP Newsletter, Vol. 10, No. 1.

Nielsen, Lilli. Space and Self, SIKON, 1992.

Nielsen, Lilli. Early Learning Step by Step, SIKON, 1993.

Nielsen, Lilli. Are You Blind?, SIKON, 1990.

Notes taken from lectures given by Dr. Lilli Nielsen at conferences in Albuquerque, New Mexico, September of 1992; in Milwaukee, Wisconsin in October 1993; and Dallas, Texas, in May 1994.


Distinguished Educator of Blind Children Award for 2005

by Sharon Maneki

[PHOTO Sharon Maneki (Giving Distinguished Educator of Blind Children Award)]

Sharon Maneki

Editor's Note: Sharon Maneki is president of the National Federation of the Blind of Maryland. She also chairs the committee to select the Distinguished Educator of Blind Children for 2005.

The National Federation of the Blind will recognize an outstanding teacher of blind children at our 2005 convention next July. The winner of this award will receive an expense-paid trip to the convention, a check for $1,000, an appropriate plaque, and an opportunity to make a presentation about the education of blind children to the National Organization of Parents of Blind Children early in the convention.

Anyone who is currently teaching or counseling blind students or administering a program for blind children is eligible to receive this award. It is not necessary to be a member of the National Federation of the Blind to apply. However, the winner must attend the national convention. Teachers may be nominated by colleagues, supervisors, or friends. The letter of nomination should explain why the teacher is being recommended for this award.

The education of blind children is one of our most important concerns. Attendance at a National Federation of the Blind convention will enrich a teacher's experience by affording him or her the opportunity to take part in seminars and workshops on educational issues, to meet other teachers who work with blind children, to meet parents, and to meet blind adults who have had experiences in a variety of educational programs. Help us recognize a distinguished teacher by distributing this form and encouraging teachers to submit their credentials. We are pleased to offer this award and look forward to applications from many well-qualified educators.

Please complete the application and attach the following:

1. A letter of nomination from someone (parent, co-worker, supervisor, etc.) who knows your work;

2. A letter of recommendation from someone who knows you professionally and knows your philosophy of teaching; and

3. A letter from you discussing your beliefs and approach to teaching blind students. In your letter you may wish to discuss topics such as the following:

• What are your views about when and how students should use tape recordings, magnification devices, the slate and stylus, electronic notetakers, computers, and other technology?

• How do you decide whether a child should use print, Braille, or both?

• How do you determine which students should learn cane travel (and when) and which should not?

• When should keyboarding be introduced?

• When should a child be expected to hand in print assignments independently?

National Federation of the Blind Distinguished Educator of Blind Children Award

2005 Application

Deadline: May 15, 2005


Home address:            

City, State, Zip:

Phone: (H) (W) (C)




City, State, Zip:

Use a separate sheet of paper and answer the following:

• List your degrees, the institutions from which they were received, and your major area or areas of study.

• How long and in what programs have you worked with blind children?

• In what setting do you currently work?

• Briefly describe your current job and teaching responsibilities.

• Describe your current caseload, e.g., number of students, ages, multiple disabilities, number of Braille-reading students, etc.

Attach the three required letters to this application and send all material by May 15, 2005, to:

Sharon Maneki, Chairwoman, Teacher Award Committee, 9013 Nelson Way, Columbia, Maryland 21045-5148, <[email protected]>, (410) 715-9596.


Emerging Victorious:

How Braille Reading Pals and Similar Programs

Are Promoting a More Literate Generation of Blind Children

by Anna Cheadle

[PHOTO Kayla Harris & Kevin Harris]

Kevin Harris prepares to read a Dr. Seuss print/Braille storybook to daughter, Kayla, and her Beanie Baby® reading pal.

NOTE: The full text of all research cited in this article is available online. See "Sources" for URLs.

What do Woody, Fred, Colossal, Snowball, Fluffy, and Emily have in common? They are helping blind children ages 3-7 develop reading skills that will enable them to be self-sufficient, independent, and successful throughout life. Ok, so the kids' parents might be helping too, by setting aside time each day to read with their child, but furry Beanie Babies® certainly play their part. For one thing, they provide an incentive that makes reading time fun and social. They also allow the child to practice pronunciation, intonation, and pacing they hear during story time by reading to the Beanie pal as if it was the "child." A growing body of literature and research regarding early experiences of written material, referred to as "emergent literacy," finds, time and time again, that successful readers develop literacy skills long before they actually "read." Using the example from above, children can learn pronunciation, intonation, and pacing, without actually being able to read words on a page. Most importantly, the research finds, children who learn to associate reading with fun and to associate symbols with spoken language at a young age (2 or 3) are more successful when they do learn to read. Such skills are just what the National Organization of Parents of Blind Children (NOPBC) wants to encourage with its new, non-competitive Braille Reading Pals (BRL Pals) program.

My son really enjoyed participating in this program. He liked the idea that we were also reading to his reading pal, who he named "Fred." Thank you.

  -Gloria (Liam is 6)

The program for blind infants, toddlers, preschoolers, and reading-delayed older students calls on parents to read aloud to or with their children for 15 minutes a day, with a Beanie Baby® "reading pal" and reading pack provided by NOPBC. Braille Reading Pals allows blind children to relate reading with fun and associate raised bumps with language, skills that the body of research in emergent literacy deems as essential for future reading success.

Braille for Life

Ellie reads Braille a lot–her favorite thing!

   -Jan (Ellie is 6)

You've all heard the figures. Braille readers truly are leaders. According to one study by Ruby Ryles, Ph.D.:

(Ryles' study is selectively reprinted in the February, 1998, issue of the Braille Monitor.)

Sound like something you've heard before? Probably. We all know the importance of Braille, not only in more measurable terms as in Ryles' study, but also in self-esteem, confidence, independence, and, if I may allow myself a dip into more "technical" terms–self-actualization, since Braille enables the uninterrupted pursuit of interests and passions. Braille has all sorts of important uses in the adult world–from being able to read the label on medication, to choosing the vacation destination of your dreams.

But maybe you haven't heard the overwhelming evidence that success in learning to read in the first place is greatly improved by even earlier literacy experiences. "Experiences with print (through reading and writing) give preschool children an understanding of the conventions, purpose, and function of print–understandings that have been shown to play an integral part in learning to read," write Gunn, et al., in a synthesis of emergent literacy research. Debra Johnson cites no less than six studies when she claims, "According to current research, children' s literacy development begins long before children start formal instruction in elementary school (Allington & Cunningham, 1996; Burns, Griffin, & Snow, 1999; Clay, 1991; Hall & Moats, 1999; Holdaway, 1979; Teale & Sulzby, 1986)." The mounting research finds that experience and interaction with written material before kindergarten lays the groundwork for future literacy skills.

Emergent Literacy

Though this concept might seem obvious to some, it has been a long time coming. Emergent literacy contrasts the "reading readiness" view, which holds that children must reach a certain level of physical and neurological maturation before they are ready for reading and writing. Often in the past, and still some today, reading to pre-K children is considered irrelevant, useless, or according to some, harmful. (Johnson) Emergent literacy holds that reading and writing skills develop concurrently in response to environmental stimuli, rather than linearly after a certain amount of cognitive development (i.e., after a child learns to read, he is ready to learn to write). (Johnson) Emergent literacy, then, "is characterized by the early development of understanding that abstract symbols have meaning and that people use these symbols for the communication of ideas." (Koenig, cited in Stratton) In short, emergent literacy describes how children can become attuned to spoken and written communication almost from birth. The more attuned they are, the better readers they become.

Observable stages in development mark this process as it occurs. Specifically, Johnson notes that at 2-3 years old children begin to "produce understandable speech in response to books and the written marks they create." At 3-4 years, children begin to "read" by themselves, actually reenacting from pictures and experimenting with written scribbles. Studies have found these "written scribbles" to be distinct from drawings in children as young as 3, as J. M. Stratton remarks. "Harste and Woodward (1989) reported that when 3-year-olds were asked to make a picture, the marks they made were distinctly different from those they made when asked to write their names. Gibson (1989) and Neuman & Roskos (1993) reported similar findings." This "written scribbling," clearly requires knowledge that symbols represent speech and are different from other visual representations.  If children already have this knowledge at age 3, it only further confirms that literacy skills begin developing even earlier, in the first year of a child’s life.


There is no reason that the stages of development should be different for blind children, and no excuses can legitimately be made about how they are often denied the rich environment in which pre-literacy skills emerge. Not surrounded by and immersed in Braille like sighted children are in print, blind children could lack the opportunity to associate the Braille symbol with spoken language at an early age. Even worse, some parents of blind children intentionally forego reading to them: "since the children could not see the pictures, the parents thought they might be confused by the visual concepts." (Crespo, 1990, cited by Stratton) Surely, the result of such an approach would be a more confused child, one from whom information about the visual world is intentionally withheld for no apparent reason. In fact, storytelling is the ideal platform to instruct your blind children about the visual world. From the comfort of their own bedroom, your children can learn about tiger stripes, unicorn horns, sign shapes, different textures, car and truck shapes, and more, then take that information with them into the world as they learn to socialize with other children who avail themselves of such information through sight. It is an opportunity that should be capitalized on rather than avoided.

Likewise, parents who believe that the Braille code is too complicated for their blind child should use preschool as a time to introduce their son or daughter to the "bumps" of Braille, rather than waiting a few years to introduce the concept, after the "preliteracy" window may have already passed. If anything, the research shows that the 3-year-old brain is ripe for discovery of the symbolic world. Children can either conclude that they have access to written language themselves through "bumps", or that they can only access written language through another person. Though it is never too late to introduce Braille, the research is clear: it is never too early, either.


The girls [blind/visually impaired triplets] loved reading time and the Beanie Pals. We used reading time as a reward after doing Braille lessons and cane (O&M) lessons each evening…It was our time together to explore new worlds, meet new friends, have wonderful adventures, and most of all be together. They had so much fun! We would love to participate again!!!

   -Darlene (the triplets, Caitlin, Courtney, and Cassidy, are 5)

I read to my daughter every night–usually 3-4 small books–several times–she LOVES story time.

  -Dawn (Kimberly is 3)

During a child' s first two years, the most important thing you can do to foster reading is fill a child with "warm interactions around age-appropriate books that teach them the equation: books = love + fun," says Grover Whitehurst, a renowned reading specialist and Chairman of the Psychology Department at the State University of New York, Stony Brook. (Gabriel) The same theme appears when Stratton discusses literacy outcomes that are common to all emergent literacy research. They include:

…the discovery that books are fun, awareness that symbols represent meaning, understanding that the story comes from print, awareness of the structure of stories, hearing "book language" as different from conversational language, and fostering a desire to read (Anderson et al., 1985; Clay, 1991; Gibson, 1989; Neuman & Roskos, 1993; Teale & Sulzby, 1989). Among the suggested indicators of preacademic skill outcome for 3 year olds in this area, compiled by the National Center on Educational Outcomes (Ysseldyke, Thurlow, & Gilman, 1993) is that the child demonstrates an interest in books and in listening to stories.

Indeed, making reading into a fun-time is so crucial that the authors of the new book, What Parents Need to Know about Reading and Writing, offer a list of tips to achieve this result. Though not designed with blind children in mind, any of the tips can be adapted easily for use with a blind child. Compiled by the Learning Research and Development Center at the University of Pittsburgh and the National Center on Education and the Economy (NCEE), these tips include reading with your child every day, listening to your child read to you, reading street signs with your child, making shopping lists together, finding books to match your child' s interests, and encouraging your children to act out stories with brothers or sisters [or reading pals!] (Gabriel)


[Kimberly] has now started to identify the "bumps" on the pages as Braille!    

   -Dawn (Kimberly is 3)

I now can read to [my son] while he reads it with his fingers. I love the books.

   -Brenda (Aso is 5)

The girls loved picking out a book and Courtney would learn to trace the Braille …They had so much fun! We would love to participate again!!!

   -Darlene (the triplets, Caitlin, Courtney, and Cassidy, are 5)

We read to Harmony several times a day and she is starting to feel the Braille much more.

   -Lynsey (Harmony is 3)

Though it would be unconscionable for parents of a sighted child to keep their child from seeing any print until the age of 5, 6, or 7, it is fairly routine for blind children never to experience Braille until that age or older. Considering that, "Developing the concept that a symbol is functional and represents meaning is essential to emergent literacy (Clay, 1991; Gibson, 1989)," (Stratton) such an omission could, and does, have serious consequences for blind children. As MacCuspie states, "The value and life-long benefit of early intervention with children who are blind or visually impaired is well documented (Ferrell, 2000)….As noted by one professional, “if we don' t prepare children for formal literacy instruction before they enter school then we are already way behind the starting point of their peers who are sighted.” At the appropriate age, their peers can be expected to "understand that pictures represent real items in the world, pick out one book from another by its cover, become aware that words are different from pictures, and [maybe] pretend to read." At the same age, blind children should be expected to understand that pictures represent real items in the world (tactile pictures would be useful in that context); pick out one book from another by its weight, shape, and texture; become aware that Braille bumps are different from tactile pictures, and maybe pretend to read. The appropriate age, referred to in the quote above by Butler, is the age of 3.

The Braille Readers are Leaders Braille Reading Pals program has just these goals in mind–in addition to the Love+Fun part, of course–and makes them truly achievable. By encouraging parents to spend 15 minutes per day (a lofty goal, but high expectations are part and parcel of reading success), the program encourages the "literate environment" in which "reading, writing, and oral language develop concurrently and interrelatedly," (Sulzby & Teale, 1991, cited in Gunn, et al.) and which is so crucial to literacy acquisition (McGee & Lomax, 1990, cited in Gunn, et al.).  It fosters specific skills, such as an awareness of print (in this case, Braille), and knowledge of the relationship between speech and print (or Braille), that "substantially affect the ease with which children learn to read, write, and spell (Hiebert, 1988; van Kleeck, 1990; Weir, 1989.)" (Gunn, et al.) Something as simple as letting your child feel bumps on the page while you tell them a story can impact their ability as a reader and writer in school.

If your commitment to reading and playing in an open, "literate" environment (say, with Braille blocks, a slate and stylus–under supervision–or a stylus-shaped object, or other toys), your expectation of them to become literate will work its own influence. Stratton describes a study that compared a group of visually impaired children who were expected to be print readers to a group expected to be Braille readers. Not surprisingly, 72.2 percent of the group of children expected to be print readers "engaged in scribbling activities (using pencils, markers, and paint brushes), compared to 27.6 percent of the group of expected Braille readers (using Braille writers or slate and stylus). (Craig, 1996)" Of course, these results were based entirely in the environments produced by such expectations. Blind children introduced to Braille "bumps" at a young enough age might also exhibit "scribbling," by poking holes in paper or otherwise mimicking the code. (They can use Braille writing tools, or if those are unavailable, they too can use pencils, markers, and paint brushes.) The research results do not imply that children expected to be Braille readers develop more slowly, but rather that the proper environment must be created in which they are exposed to Braille play in order to develop literacy awareness.

The Parent’s Role

Thank you for sponsoring this program. It was motivating to me as a parent, and enjoyable to Maura who knew every day she would get books read to her!

   -Jean (Maura is 3)

We love to read! By doing this program, Sonny is learning to love books too! Thanks!

   -Jeannie (Sonny is 4)

Thank you so much for this! The Beanie Baby was a great incentive!

   -Ann Marie (Kaitlyn is 3)

First and foremost, when it comes to story time, the parent is a provider. Gunn reports that in a study of 59 parents of preschool children, Hildebrand and Bader (1992) found a commonality among children who performed well on three emergent literacy measures (i.e. writing letters of the alphabet): their parents were more likely to provide them with alphabet books, blocks, and shapes. But parents also provide the time and commitment to make story time a fun and dependable part of the daily routine. Much of the research cited in this article is also replete with findings that storybook reading or reading aloud to children repeatedly emerges as "a key component in facilitating early literacy acquisition."  Both time spent reading and interest in reading are two of the strongest indicators of later reading success. The more open and creative a parent is willing to be to spark such interest and sustain it through regular reading, the more the child reaps the benefit. For one parent in the Reading Pals program, it was not books, blocks, or shapes that she needed to provide, but an alternate reading method. When her son showed disinterest in books, she found that singing the stories would keep his attention. One child's blocks are another child's songs, and it's the parent's job to identify what works and provide it. Because this parent provides a regular, specially customized story time, her son will be better prepared to read and write and enjoy it later on!

Another crucial role of the parent is as a model reader. Research draws strong correlations between "reading to children and subsequent success on reading readiness tasks." Such studies, too numerous to cite specifically here, were conducted by Hiebert, 1988; Mason & Allen, 1986; Morrow et al., 1990; Teale & Sulzby, 1987; Burrough, 1972; Chomsky, 1972; Durkin, 1974-75; Fodor, 1966; Irwin, 1960; Moon & Wells, 1979; Smith, 1989; and Anderson, Hiebert, Scott, and Wilkinson, 1985. Some of this research indicates that the child will model their own reading behaviors on the parent. "The child discovers many things about the functions of symbols and writing by observing others who are engaged in such activities and by actively experimenting (Gibson, 1989; Teale & Sulzby, 1989)" observes Stratton, and Gunn, et al., echo the sentiments. Johnson also describes this phenomenon, and detailing how children come to imitate their literacy models: "Gradually, these readings [play reading exhibited by toddlers] demonstrate the intonation patterns of the adult reader and language used in the book." Just as children "play house," by imitating parents and relegating their own role to a doll, children can "play read" by imitating story time. The Beanie Baby® Braille pal provides an excellent "child" for play reading, but the parent must be the original reading model. A child who understands that symbols are related to language and intonation patterns is already well on the way to literacy.

But parents and teachers all know committing this time is not easy. Moreover, finding new and fresh Braille books for your child, in addition to the old favorites, requires more than a quick nip to the local library. A position paper on literacy found on the Canadian National Institute for the Blind's Web page declares, "parents must be provided with both the materials and the skills and ideas so they can implement simple emergent literacy programs in their homes. These kinds of programs must be made accessible to parents without undo hardship or cost, for parents are the primary teachers of all children in this age group [2-5 years old]." While the sentiment is noble, the follow-through can be tricky. Braille Reading Pals is one way that parents can set up their own "emergent literacy programs," though we still prefer to call it "Love+Fun time"! Parents and teachers aware of techniques to encourage emergent literacy ensure that a child need not be competitive to be victorious.

How to Get Involved and Additional Resources

I enjoyed the extra readings for myself. I did like having the opportunity to have the "twin" books.

            -Anonymous parent

Be sure to provide plenty of tactical stimulation to your child while you read. This may include touching and holding the book (don't worry if it isn't "the right way round"), handling toys or objects like those in the story, or acting out the story with the Beanie Baby. When your child is ready, you might also have them retell some of their favorite stories by touching objects in sequence, much like a sighted child would retell a story by looking at pictures. But of course always remember, as one parent noted, "the actual time spent with the parent is what is most important to [the child]."

BRL Pals Program

Why not add a Big Ears, Beanie, Lucky, Whitey, Orion, or Blue Eyes to your family or classroom? Once you register, your BRL Pals packet includes:

The program for 2005 will officially begin in November. To request a pack contact Barbara Cheadle, (410) 659-9314, extension 2360 or 2361, <[email protected]>. Also, watch for updates on the NFB Web site at http://nfb.org/nopbc/braillereaders/prereaders.htm

ReadBooks! Program

The National Braille Press, along with Seedlings Braille Books for Children, is producing and distributing free Braille book bags to families with blind and visually impaired children in the U.S.A., ages birth to seven (limit one bag per child per age group). The goals of this project include fostering a love of reading, encouraging parents to learn Braille, introducing blind children to a means of independent reading and writing, promoting high expectations for literacy, and preparing parents to advocate for Braille instruction in school.

Each bag contains:

1. An age-appropriate print/Braille book for three age groups: birth-3, 4-5, and 6-7 in English or Spanish;

2. a Braille primer for sighted parents entitled Just Enough to Know Better;

3. A colorful print/Braille place mat;

4. print/Braille bookmarks;

5. Because Books Matter, a guide for parents on why and how to read books with their young blind child;

6. a gift coupon redeemable for another print/Braille book or Braille/large print playing cards; and

7. print/Braille magnetic letters.

For more information contact the National Braille Press, (888) 965-8965, extension 34, or select ReadBooks! on the NBP Web site home page at <www.nbp.org/>.

Perkins Panda Early Literacy Program

The Perkins Panda program provides kits designed to increase self-awareness, develop object-identification skills, explore new environments, and expand the use of pretend play, all essential skills in developing communication and literacy. Kits include:

Complete kit is $94.95 (20% off cost of items purchased separately). Dual-speed cassette player is $79.95.

For more information, contact the Perkins School for the Blind at (800) 972-7671 or (617) 972-7667, or go to <www.Perkins.org>.v

Internet Resources

Literacy tips for deaf-blind children, many of which would be useful for blind children as well:


Emergent literacy resources



Ryles, Ruby. The impact of braille readings skills on employment, income, education, and reading habits. Journal of Visual Impairment and Blindness. May-June, 1996.


Gabriel, Jerry. Creating a reader: "Books= Love + Fun" Feb, 2001. http://www.brainconnection.com/topics/?main=fa/creating-reader

Butler, Shelley. Helping young listeners become successful readers: babies & todlers.




Gunn, et.al. Emergent literacy: synthesis of the research. National Center to Improve the Tools of Educators. Technical report no. 19, 1995.

Johnson, Debra. Critical issue: addressing the literacy needs of emergent and early readers. 1999.


Stratton, J.M. Emergent literacy: a new perspective. Journal of Visual Impairment and Blindness. May-June, 1996.


MacCuspie, Anne. Access to literacy instruction for students who are blind or visually impaired. Canadian National Institute for the Blind. 2002.


Confessions of a BrailleNote User

by Jennifer Dunnam

[PHOTO Jennifer Dunnam (2004)]

Jennifer Dunnam

[PHOTO John Pastorius and Renee Bevan (Examining BrailleNote)]

John Pastorius examines a BrailleNote in the exhibit area of the Federation convention while Mom, Renee Bevan, looks on.

Reprinted from the Minnesota Bulletin, Summer 2003, a publication of the NFB of Minnesota.

About six months ago, I acquired a BrailleNote. The University of Minnesota (where I work) had bought it for an employee and when that employee left, I inherited the machine. The BrailleNote is a personal data assistant (PDA) with multiple functions–much like the PalmPilot that many sighted people use–with a refreshable Braille display.

Most of you probably know that I have been an avid user and a zealous promoter of the Braille slate and stylus. I constantly make lists of things to do, take notes, and jot things down using the slate–often while riding the bus or waiting for appointments. So why would I want a BrailleNote?

My favorite use for the BrailleNote (after I turned off the voice output function) was to learn how to download a book into it. Suddenly I had access to an almost endless supply of Braille books–from Bookshare.org, from the National Library Service's WebBraille, and from books I scanned myself. I can put three or four books in at once (I don't have a flash memory card; if I did, I could carry around many more). I use the BrailleNote to read books for pleasure on buses, planes, etc.; I use it to read, take notes, and study for my history class.

The BrailleNote also has added to my versatility at my job. I can use it as a Braille display for my computer, so I can proofread foreign language material without having to Braille it. My job at the University involves coordination of alternate formats, including tape recording course materials. Student workers do most of the tape recording in our office but, on occasion, if we get into a scheduling bind, the person who coordinates the student workers or other staff will step in and do some taping. I have sometimes thought that I would like the ability to do taping when needed as well, but the only way for me to do that is to read it in Braille, and it never seemed an efficient or wise use of resources to use up paper to emboss a Braille copy for taping. Now, though, if the print copy is clear, I can help with taping too. I can scan about fifty pages in ten minutes, then download the file to the BrailleNote, and tape-record away. I only have an eighteen-cell display on my unit, so it took some practice to coordinate the display and my fingers so the reading rhythm sounded smooth and natural, but now it works just fine. Good thing, too, because we've had a number of last-minute requests recently, so I've taped several hundred pages this semester.

My schedule gets ridiculously complicated sometimes, so I have always kept a calendar/planner for my work schedule as well as my personal one. I did this using a spiral notebook and a slate and stylus. There's a planner in the BrailleNote, so I use that these days, and it's quite efficient. There is also a database for keeping people's contact information. Whenever possible, I prefer to use the card file on my desk because it's faster, but when I'm not near the card file and I'm making calls on my cell phone, it is quite handy to have all this information in one small place.

The BrailleNote's features are very useful to me, but I still never go anywhere without a slate. I carry one in the case with my BrailleNote. Why? First, of course, there's the obvious reason: as a backup. I have needed that backup plan far more often than I expected to. At least four times during the past six months, I have accidentally left the BrailleNote on and let the battery run down without realizing it until I needed to take some important notes. Once that happened during a state rehabilitation Council for the Blind meeting. How disruptive it would have been to try to find an outlet and plug in the BrailleNote near where I was sitting. Instead, I pulled out my trusty slate and steno pad and kept right on going. I'm thankful not only that I had the slate with me, but that I had been taught and encouraged to use it well so I could make that relatively seamless transition.

Sometimes, though, my BrailleNote is working perfectly, and I still find I'd rather use a slate. Obviously, if someone hands me a page of print–like a brochure or receipt–I can't use a BrailleNote to label it. Instead, I immediately place a slate over the bottom of the paper and write a few words so I can identify it later.

At this year's Washington Seminar during our Minnesota caucus, Joyce read us the names, times, and places of our appointments with the members of Congress. I started to copy them down using the BrailleNote, but then I thought to myself, "We have quite a few appointments per day. If I don't remember a time or a room number while I'm walking around the Capitol, I don't want to have to drag my BrailleNote out of my briefcase, turn it on, and hunt through a file to find what I'm looking for. I'd rather just keep a card in my pocket that I can quickly refer to." So I put away the BrailleNote and copied it all down with my slate.

I enjoy this BrailleNote very much, especially as a reading device; I will be a very unhappy camper if someone decides I can't have it anymore. Devices such as this with refreshable Braille displays take away an oft-used excuse for people not learning Braille–that Braille is not widely available. The availability of Braille is reaching an all-time high (and will get nothing but better once we get the Instructional Materials Accessibility Act passed). However, what some consider a tiring refrain is still true: technology offers wonderful enhancement, but never an all-out replacement for low-tech tools and for the skills needed to use them well.

Five To Make Ready

Tips for Aspiring College Students

by Patricia Morrow

[PHOTO Patricia Morrow]

Patricia Morrow

Editor's note: The following presentation, originally published several years ago in the NFB of Missouri newsletter, The Blind Missourian, has been updated for this printing. Patricia Morrow is one of the blind leaders in the NFB of Missouri affiliate. Here is what she has to say to high school students considering going on to college:

When I was teaching at the university, there were certain expectations that I had of all students. In fact, I hesitate to call them expectations because expectations I would have considered to be intellectual capabilities: organizational skills, insight, creativity, independent thought, and logical argument. What I'm thinking about are the unspoken assumptions I made about what all students could do. These assumptions come to mind because sometimes they offer problems for blind students.

I believe that most instructors share these assumptions. When I talk about the necessity of students meeting them, it is not to indicate that they should not attend college. It is to help them better prepare to attend college. It is to allow them to master what all students have to master by way of technique so that they can give their full time to learning what they have come to college to learn. And believe me, that will take all their effort. Students don't want to be stuck with figuring out how they are going to get hold of the learning they have to do.

The very first thing you have to do to learn anything in class is to get there--and get there on time. That means you may have to make it from the physics building to the computer lab in the education building--a fifteen-minute walk--in ten minutes. So you learn the short cuts the other students take. It means that you can't depend on waiting for anybody; you must learn to go by yourself. And you must go if there is an exam given at seven o'clock at night, or if there is a snowfall of ten inches. You must get there, and you must get there by yourself. For almost all of us, blind or legally blind, the implication is that you will need a white and the skills to use it.

When you come to class, you'll see that everyone makes notes about the lecture. You know that the definition of a really bad class is one where the notes pass from the instructor's folder to the student's notebook without going through the brain of either. Notes should be your sorting out of the important points in a lecture. I understand that some people employ other humans--note takers--to take notes for them. That means that the lecture is going through somebody else's head, not yours. A very bad idea. Others tape record lectures. For this the professor's permission must be granted because the lecture is his or her intellectual property just as though it were an article or a chapter of a book. But that's not the worst thing about recording. The worst thing is that no one pays close attention to the lectures if he or she thinks he or she will hear it again. This mental slouching through a class can become a really bad habit. Besides that, there's the time factor. I never had twice the time of anyone else to give a lecture; in fact, it always seemed to me I had only half the time of anyone else. Other kinds of work, like reading and referencing research, of necessity takes longer than it does for others. For the legally blind, the question always arises: does it take as long to write notes in large script with a felt tip pen as it would to, say, paint a sign? Often the best, if not the only, answer to the problem of note taking in class is Braille. An electronic note taker with a refreshable Braille display is the common high-tech answer to note taking for today's college students. However, the skillful use of the slate and stylus is still a fast (and cheap) low-tech solution.

In classes, particularly if they are seminars, students are expected to do some of the teaching (which, by the by, is the soundest method of learning). So you may anticipate, sooner or later, giving a report or forming part of a panel. This first requires reading. You may be able to accomplish this with a Closed Circuit TV (CCTV), or a scanner, or your computer speech program for reading Internet material, and/or you may use recorded books. Sometimes a live reader may be employed. But you are the one putting the report together. The organization, and naturally the notes from which that organization springs, is yours. So you take notes from your reading and you organize those notes in order to present them, probably on some kind of note cards. If you write the note cards in print with a pen, remember that the surest way to lose your audience (including your instructor) is to hold a piece of paper up to your nose and try to laboriously make it out. Again, competency with Braille appears the best answer.

Then, fourth on our list, are the papers. Like oral presentations, papers start out with lots of reading and note taking. But with papers, documentation is required. You must state from where the ideas and the direct and indirect quotes come. You do this by providing footnotes. For this, you have to know such things as authors, titles, publication information, and page numbers. Might as well make a habit of automatically putting these down as you read. Sometimes, you may have to get a print copy of a recorded book and ask a reader to look it up for you. (That's one of the things I was talking about when I said that some processes are slow and very difficult to speed up. So don't take extra time to listen twice to the same lecture.) After you have made your notes, the problem of organizing and writing is probably no more difficult for you than for anyone else. Provided, that is, that you are adept at using a computer with the adaptive equipment you need. Any student without computer skills will have trouble--with a capital T--keeping up.

Fifth, examinations: this is the really good news. No longer must you use a live reader to read questions or tape your answers. What is needed is a computer with a scanner and the adaptive equipment that you find most useful to you. To tell you the truth, it's much faster to write and easier to organize and reorganize answers on a computer than by using pen and paper. And with a scanner, of course, you can read your own questions.

So, to meet the assumptions that instructors have about students and to be ready to tackle the real challenge of college, you need cane travel, Braille skills, and computer literacy-the more the better. And if you go off to college with these skills--to paraphrase another Missourian, Mark Twain--you can go off with all the calm and confidence of a Christian--with four Aces up his sleeve.


Blind Child Featured in HBO Special

by Mike Molloy

[PHOTO Patrick Malloy]

Patrick Malloy

Reprinted from the February 2004 issue of In Touch, the newsletter of the New Jersey Parents of Blind Children (POBC-NJ), an affiliate of the National Organization of Parents of Blind Children and the NFB of New Jersey.

Carol Castellano, President, POBC-NJ: One day I received a phone call from a director at HBO who said they were looking for a blind child to include in a special they were doing on celebrating diversity. They seemed to want an active, happy blind kid, so it seemed that they were going into the project with some good attitudes and expectations. I called several POBC families whose children were in the right age bracket and asked if I could pass their names along to the director. HBO then took over the process and interviewed and the kids. They eventually selected…well, I'll let Mike Molloy tell you the rest of the story:

When we received a phone call last fall from Carol Castellano asking us if we would consider allowing HBO to do a film interview with our son, Patrick, for an HBO special on diversity and differences, our family talked it over. We got back to Carol to say "as long as they are hoping to send the correct message concerning blindness we are fine with it." Thus began our experience with the nice folks at HBO.

Patrick is a typical ten year old. He attends Goodnoe Elementary School where he is in the fifth grade. He likes science class the best. He loves Harry Potter books. He plays the piano and swims. Since being introduced to the Mid Atlantic Junior Blind Golf Association, he has been an avid golfer. Winning the putting competition last spring counts as one of his favorite accomplishments. He'd like to meet Tiger Woods.

After Carol gave our name to the folks at HBO, we were called and interviewed over the phone and eventually a director came down from New York city to meet with Patrick and ask him lots of questions. He must have passed her test because the very next week the whole film crew showed up to follow Patrick for an entire day. There was a camera man, a sound man, the lighting guy, and the director and her assistant. They came to the house and started by interviewing Patrick in his room. They then went to school with him and filmed him in the halls and in his classroom. His fellow students thought it was very cool. Next came filming him on the bus ride home! (It sounded like it got very exciting). Then they followed Patrick to the local country club. In spite of the fading light and cold they were able to do some more filming. Finally they followed him home and got in one last shot before heading back to New York.

My favorite moment occurred when the director asked Patrick if it was frustrating being blind and did he regret not being able to do some things that sighted people could do. Patrick took a moment and then said to her, "Do you know Erik Weihenmayer?" "No," she answered, "who is he?" Patrick replied, "I met Erik Weihenmayer. He is a blind man who has climbed Mount Everest. There are a lot of sighted people who can't climb Mount Everest. I think blind people can do just about anything they want to." I pumped my fist and got goose bumps at his answer. Yes!

To all the parents who have to make those decisions--do we cut the lawn and do the chores or do we drop everything, pack everyone into the car, and make the effort to go to those special events--I say, yes, it is worth it! Patrick heard the message that Erik delivered that day and was able to clearly articulate it to someone who needed to hear it. Thank you, Erik and thank you, Patrick.

Note: Unfortunately that sound bite didn't make the final cut but Patrick did get a feature on the special. The show was shown in February 2004, on HBO Family and then re-aired throughout the following month on both channels. The show is geared towards younger children but the message is good for all.


Extended School Year Services

by Leslie Seid Margolis

[PHOTO Leslie Margolis]

Leslie Margolis

Editor's Note: As an attorney with the Maryland Disability Law Center (MDLC), Margolis, is widely known and respected throughout the state for her legal knowledge and leadership in advocacy for children with disabilities. She has also successfully handled a number of advocacy cases for blind children throughout her career with MDLC. I have had the opportunity to work with her on various committees and organizational bodies throughout the years. The work she does is careful, thoughtful, and thorough. As the parent of a child with a disability, she has a passion for her work, but she never lets it cloud clear, legal thinking. The following document is reprinted with permission of the author. For ease in reading for the "lay" person, and because of space limitations, Ms. Margolis has also given us permission to omit the sections (about six pages) on Office of Special Education Programs (OSEP) policy rulings, civil rights rulings, and significant case law. However, as a service to our readers, the NOPBC will provide a free electronic copy of the complete handbook if you send your request to: <[email protected]>. Please type "ESY Handbook" in the subject line of the email, and tell us your name, what state you are from, and whether you are a parent, a teacher, an attorney, or advocate. You may also call (410) 659-9314, extension 2361, and make arrangements to get a print copy.

I. Introduction

Extended school year (ESY) services are services provided beyond the regular school year that are necessary in order for a student to make educational progress during the school year. These services must be individually designed to meet specific objectives included in a student's individualized education program (IEP) and are part of what constitutes a free appropriate public education for the student who receives them. ESY services are not simply an extension of time in school, an automatic summer school placement, or a summer enrichment program.

II. Federal Law and Policies

A. Individuals with Disabilities Education Act (IDEA)

The statute is silent regarding ESY services.

B. IDEA Regulations

Regulations were issued in 1999 to implement the 1997 reauthorization of the IDEA. These regulations define "extended school year services" for the first time (34 C.F.R. 300.309(b)): "special education and related services that-—

1) Are provided to a child with a disability-

(i) Beyond the normal school year of the public agency;

(ii) In accordance with the child's IEP; and

(iii) At no cost to the parents of the child; and

2) Meet the standards of the State Education Agency (SEA).

Every public agency must ensure that ESY services are available to students whose IEP teams determine that such services are necessary for the provision of a free appropriate public education. 34 C.F.R. 309(a)(2).

The regulation specifically prohibits public agencies from limiting ESY services to particular categories of disability and from unilaterally limiting the type, amount, or duration of the services. 34 C.F.R. 300.309(a).

[Section II: C, D, E, F, G, and H have been omitted.]

III. General Eligibility Criteria for ESY Services

The general standard of eligibility for extended school year services is that the student will not be able to continue to make meaningful educational progress during the school year unless extended school year services are provided. Some states may apply this standard to "critical life skills" which are not defined in federal law and may be interpreted differently within states. Generally, the following factors must be considered:

A. Regression/Recoupment

Regression: All students lose some skills during the summer. In determining eligibility for ESY services, it is necessary to show that the student would regress more than the amount that would be expected for any student.


Recoupment: All students need some time at the beginning of a school year to re-learn the skills they have lost during the summer. In determining eligibility for ESY services, it is necessary to show that it would take longer for the student with disabilities to regain skills than it would for students without disabilities.

NOTE: It is NOT necessary for a student actually to regress or take a long time to recoup skills before being determined to be eligible for ESY services. The LIKELIHOOD of regression or lengthy recoupment period, either of which would jeopardize the student's ability to make educational progress, is sufficient to establish eligibility. Also note that the regression-recoupment standard should include consideration of additional factors; generally, courts that have adopted a regression-recoupment standard have warned against "converting what should [be] a multifaceted inquiry into application of a single, inflexible criterion." See, e.g., Johnson v. Independent Sch. Dist. No. 4, 921 F.2d 1022, 1029 (10th Cir. 1990), cert. denied, 500 U.S. 905 (1991).

B. Other factors (as determined through cases and policy rulings):

1. Nature and/or severity of disability

2. Degree of progress (if progress is very slow, student may need ESY services in order to continue to make progress)

3. Emerging skills/breakthrough opportunities (e.g. student just beginning to communicate, accomplish self-care skills, read or write)

4. Interfering behaviors (e.g., student's behavior has an impact on his or her ability to make educational progress)

5. Special circumstances (e.g., student missed significant amount of time because of illness, surgery, or other personal circumstances; student at risk of more restrictive placement; student moving from restrictive placement to inclusive program, etc.)

NOTE: This list is not all-inclusive. See: Johnson v. Independent School District No. 4, 921 F.2d 1022 (10th Cir. 1990), cert.denied, 500 U.S. 905 (1991); Reusch v. Fountain, 872 F.Supp. 1421 (D.Md. 1994); JH v. Henrico County School Board, No. 02-1418 (4th Cir., April 28, 2003)

C. Examples:

1.Fifteen-year-old student with mental retardation who has almost learned to cross a street safely and will likely regress and have to learn this skill over again in the fall;

2.Student with autism who has met a social/behavioral objective on his IEP designed to reduce the frequency of self-injurious behavior and who is likely to resume that behavior at the previous level unless he receives extended school year services to enable him to maintain his behavior.

3.Ten-year-old student with cerebral palsy and learning disabilities who has just learned to activate an augmentative communication device to answer basic questions and will not retain this skill unless it is practiced consistently in a structured setting;

4.Student with deafness who has received a cochlear implant and needs education services and speech therapy in order to process sounds effectively so she will be able to obtain academic information orally;

5.Seven-year-old student with vision impairment, cerebral palsy, and learning disabilities who is moving from a day placement at the state school for the blind with a functional curriculum to a placement at her neighborhood school with a combination of general education classes and special education classes who needs special education services during the summer to maintain her skills so she will make a smooth transition to her new school;

6.Three-year-old student with developmental delays who is on a toileting schedule with verbal prompts at school and who may regress significantly over the summer and require considerable retraining in the fall if the toileting program does not continue;

7.Eight-year-old student with mental retardation who has spent most of the school year learning one or two basic language or math concepts and whose rate of progress is so slow that she needs extended opportunities to learn and practice skills;

8.Twenty-year-old with developmental disabilities who recently obtained paid supported employment in the community and would likely lose the position without continued transition services during the summer;

9.Ten-year-old student with blindness who is academically above grade level in all areas except math who is moving from a separate special education school to a regular education placement and who needs math instruction in order to catch up and begin the school year in a general education math class; 

10.Student with developmental and physical disabilities who had major surgery during the school year, was unable to participate in educational activities for several months because of pain and post-surgery complications, and who needs extended school year services to make up for lost time.

IV. Building a Case for Extended School Year Services

A. Measurable Goals and Objectives on IEP

The decision regarding eligibility for extended school year services should be based on data and other information about the student's progress. At the outset, it is critical to ensure that the IEP contains measurable goals and objectives so that information about the student's progress may be collected. In evaluating an IEP's measurability, it may be helpful to ask the following questions:

1) Does the goal reflect a starting point and a proposed ending point?

Example: Jane will increase her reading level from 3rd grade, 3 months, to 4th grade, 3 months.

Example: Steven will increase his current 150 word reading vocabulary by learning to read 60 new words.

Example: Samantha will correctly answer one-digit addition questions 9 out of 10 times by choosing the correct answer from a choice of four. 

A goal that has a starting point and a proposed ending point is measurable. It is possible to measure how many months Jane gains in reading skills over the course of a year. It is easy to measure how many new words Steven learns. Likewise, whether Samantha is able to answer basic addition questions correctly 90 percent of the time can be readily measured.

2) Are the objectives or short-term benchmarks linked to the goal in a logical way? In other words, if the student achieves each of the objectives, will the goal be accomplished?

Example: Annual goal—Ellie will independently drink from a cup, taking the cup from table to mouth and returning the cup to the table.

Objectives: Ellie will take a three-fourths full cup from table, take a drink, and return cup to table with verbal prompts and hand over hand assistance.

Ellie will take a three-fourths full cup from table, take a drink, and return cup to table with verbal cues and tactile cuing.

Ellie will independently pick up a three-fourths full cup from table, take a drink and return cup to table with verbal cuing and tactile cue to initiate.

It is important to recognize, however, that not every measurable goal is appropriate. For instance, a goal that requires a student who is blind to avoid obstacles in her path with 80 percent accuracy is not appropriate if the obstacle happens to be a car.

3) Are the short-term benchmarks or objectives easily measured? School districts should maintain data regarding a student's progress towards IEP goals and should collect data periodically. This is more likely to happen if the data can be collected and compiled easily.

Example: Every month, Jane's teacher administers an informal reading test to Jane to measure her reading skills and keeps this information both for the quarterly progress report she must prepare and for purposes of determining Jane's possible eligibility for ESY services.

Example: Steven's teacher maintains a list of each new word Steven learns to recognize and pronounce correctly. Knowing that he should be learning about 15 new words a quarter, since his annual goal is to learn 60 new words, she can easily determine if Steven is on track to accomplish the goal.

Example: Every week, Samantha's teacher gives the class a math quiz with 10 problems. While the rest of the class is progressing to multiple digit addition and subtraction, Samantha's test consists of one-digit addition problems. Samantha's teacher keeps all of Samantha's quizzes in a folder and adds the results to a chart every month. This gives her the information she needs for Samantha's quarterly progress report as well as information that can be used in determining whether or not Samantha is eligible for ESY services.

B. Identification of Goals/Objectives as Critical Life Skills

Some states require the provision of extended school year services based on the criteria discussed above as applied to those goals and objectives on the IEP that reflect critical life skills, or skills that are critical to the student's overall educational progress. School systems do not necessarily have a uniform view about what constitutes a critical life skill, and state statutes may or may not provide definitions. Some districts view critical life skills as only functional skills of daily living; others consider academics to be critical life skills. However, what constitutes a critical life skill for a particular student must be determined individually, based on the student's age, disability, and other circumstances.

It could be argued that a student's entire IEP addresses critical life skills and that, therefore, the entire IEP must be implemented for an ESY program. While this may be true for some students, the eligibility criteria must still be applied to the goals and objectives on the IEP; even if an objective addresses a critical life skill, ESY will only be required if the regression/recoupment or other criteria are met. Generally, in practice, certain portions of the IEP will be selected for focus during the ESY program. A separate ESY IEP is clearly contemplated by OSEP. See, e.g., Letter to Myers (August 30, 1989), 213 EHLR 255.

C. Data Collection/Reporting of Data

It is important to ensure that the measurable goals and objectives of the student's IEP are actually measured, i.e., that the data are collected and reported. This information will be crucial to the determination of eligibility for ESY services. In addition to periodic data collection during the school year, the IEP team should test the student or measure his or her status at the beginning of the school year to determine if there has been regression and, if so, how long it takes the student to recoup lost skills. Sound data and information collection practices are particularly important for students with severe disabilities, since their progress may be measurable only in minute steps.

D. IEP Team Meeting:

IEP team members sometimes discuss ESY services in general terms, rather than with reference to the particular IEP goals and objectives on the student's IEP. Parents and advocates should call the IEP team's attention to the student's IEP, goal by goal, and discuss both progress towards each goal and the student's need for ESY services. Using the applicable standards for eligibility, the team should evaluate the student's need for ESY services for each goal and objective. If the governing state statute discusses ESY services in the context of "critical life skills," then the team should examine each goal and objective to determine if it is related to a critical life skill.

It is crucial that accurate and complete IEP meeting minutes be prepared. Any points of importance, such as insufficient data, the student's lack of progress, or any other issues regarding eligibility for ESY services or the substance of an ESY services program should be documented in the minutes. This document may be essential if the parent chooses to appeal an IEP team decision regarding ESY eligibility or services. If the minutes do not accurately reflect the substance of the meeting, the parent can ask that the minutes be revised. While IDEA regulations permit a hearing regarding a school system's refusal to amend its records, a faster and easier way to address the issue is for the parent to document the requested corrections, additions, or deletions and ask that the parent's document be released any time the original document is released. See 34 C.F.R. 300.567-569. 

E. Reports and Evaluations by School System Personnel/Independent Evaluations

As with determinations of eligibility for IDEA services and the development of a school year IEP, decisions about ESY eligibility and services will depend on the information provided by a student's teachers and related service providers. Sometimes, these anecdotal reports or evaluations and recommendations will be sufficient to support the student's need for ESY. On occasion, the IEP team may not recommend ESY but an astute analysis of the school district's evaluations and other documents pertaining to the student, in combination with effective legal advocacy, may result in the team's recommendation of ESY services.

Other times, it may be necessary to obtain an independent evaluation regarding the student's need for ESY services. The process is the same for ESY as it is for any other independent evaluation. In accord with 34 C.F.R. 502, parents have the right to obtain an independent evaluation at public expense if they disagree with an evaluation done or obtained by the school system. Similarly, although not specifically addressed in the regulations, if a school system fails to obtain an evaluation recommended by the IEP team, parents have generally been able to obtain an independent evaluation at public expense. If the school system believes its evaluation is appropriate and refuses to fund the independent evaluation, the school system must initiate a due process hearing to show that its evaluation is appropriate.

Parents always have the right to obtain an independent evaluation at their own expense. If they do so, the IEP team must consider the results of the evaluation but is not required to adopt the results. In situations in which the team does rely on the results or recommendations of the privately funded independent evaluation, families should consider seeking reimbursement from the school system. Failure of the IEP team to consider an independent evaluation constitutes a procedural violation of the IDEA but, at least in one circuit, not one that results in a substantive denial of a free appropriate public education. See, DiBuo v. Board of Education of Worcester County, 309 F.3d 184 (4th Cir. 2002)( IEP team refused to look at private recommendations for ESY eligibility for young child with autism).

It is essential that any outside professionals understand the purpose of and eligibility criteria for ESY services. Rather than focusing on what is "best" for the student or on what will enable the student to learn new skills during the summer, outside professionals should focus on what services are necessary in order for the student to be able to maintain skills and continue to make educational progress when the school year resumes. Professionals should base their opinions about a student's need for ESY on the student's specific IEP goals and should discuss the eligibility criteria as they relate to the student. Recommendations that do not relate to IEP goals and objectives are likely to be dismissed by the IEP team as "medical" or otherwise irrelevant recommendations. A report that simply notes that a student would benefit from ESY services is not sufficient. Rather, the professional should reference relevant eligibility criteria and explain why ESY is necessary in order for the student to continue to make educational progress and what the likely consequences are to the student if ESY services are not provided.

V. Due Process Challenges to Denial of ESY Services

Development of a case for due process on the issue of ESY services is similar to the development of any other case. The key aspect of preparing for an ESY services due process hearing is that of timing. Ideally, the IEP team should consider a child's eligibility for ESY services early enough in the school year so that there is time, if necessary, for a family to resolve the matter through due process prior to the beginning of the summer. Otherwise, families may be forced to expend their own funds to ensure that their child receives summer services or stand by and watch their child suffer harm without services while the procedural process runs its course. See, e.g., Reusch v. Fountain, 872 F. Supp. 1421 (D.Md. 1994) (determination of ESY services must be made early enough so that parents can appeal a denial in time to obtain ESY services if their child is found eligible).

For a variety of reasons, of course, it may not be possible to resolve an ESY matter prior to the beginning of the summer.  In this situation, if families have the resources and the ability to obtain services for their child, they can seek reimbursement. While the IDEA does not address the issue of notice regarding a family's intent to seek private ESY services, it would be wise to be cautious and have families give notice to the school system in accord with the requirements of 34 C.F.R. 300.403 regarding unilateral private placement when a free appropriate public education is at issue.

If families are unable to obtain services for their child, they can seek compensatory services to make up for the school system's denial of services during the summer. Families can use the IDEA complaint process or a due process hearing to challenge the failure of the school system to provide ESY and to seek compensatory services as a remedy. It is natural, if a student is owed compensatory services for the school system's failure to provide ESY, to accept an ESY program the following summer as the compensatory service. Likewise, if a student misses a service during the school year, a program during the summer might seem to be a reasonable way to provide compensatory services.

However, care should be taken to ensure that compensatory services are truly compensatory, rather than a substitution for services to which the student is already entitled. For instance, if a student needs an ESY program as part of a free appropriate public education, the student should receive an ESY program regardless of any entitlement to compensatory services. The compensatory services should be over and above what the student already has a right to receive. On the other hand, if a student ordinarily would not be entitled to an ESY program, compensatory services could take the form of a summer program. Advocates and families should be careful not to call this kind of summer program ESY, however, because to do so blurs the definitions of ESY and compensatory services.

VI. Practical Issues

A. Least Restrictive Environment/Location of Services:

Despite the fact that the IDEA's least restrictive environment requirements apply to extended school year services, many extended school year service programs are self-contained and serve only students with disabilities. This is because extended school year services are designed for students with disabilities and occur outside of the regular school schedule when students without disabilities generally do not attend school.

However, there are a variety of ways in which school districts can meet their obligation to provide students with disabilities extended school year services in less restrictive settings. First, as OSEP has noted, the school system could place the student in a private setting to obtain services. Second, if the school district operates a summer school program for students, a student with disabilities could receive the summer school program as his or her extended school year services or as a component of the extended school year services. For example, a student who is in self-contained reading and math classes but included in general education for all other classes during the school year could receive part of her extended school year services in a self-contained "ESY program" and part of her services in a general summer school program. Students could also receive extended school year services at a camp or other recreational facility.

Generally, advocacy efforts probably will be necessary to ensure that these types of arrangements are made to facilitate the least restrictive environment requirements of the IDEA. See, for example, Greenwich (CT) Pub. Sch. (2000), 34 IDELR 69.

In some circumstances, a family might seek an ESY program that is more restrictive than the program the student receives during the school year. In this situation, it will be necessary to explain how the student's unique needs necessitate a more restrictive environment for the provision of ESY. 

B. Cookie-Cutter, One-Size-Fits-All Programs:

Despite the requirement that extended school year services be individualized to meet a student's unique needs, school districts often tend to be rigid, offering generic programs for a set period of time that does not span the break between the end of one school year and the beginning of the next. It is not at all unusual for parents to be told, for instance, that the district's extended school year services for third and fourth graders will be at a particular site, or that the students with severe disabilities are served at a particular school. Additionally, the school system might limit services to 2 ½ hours or 5 hours per day for five weeks. While a standard program might meet the needs of some students with disabilities, families and their advocates should not feel constrained by these types of artificial parameters imposed by the school system. Depending on the student's needs, it may be possible to obtain services to supplement the standard program. For instance, a student who benefits from the district's standard five week program, offered during July and the first week of August, but who will regress with no services for the remaining weeks before school starts, might receive tutoring at home or at a camp or recreational program. Students who use assistive technology devices might qualify for extended school year services on the basis that they need to continue to use the devices in a structured setting, so they will not lose valuable academic time in the fall focusing on re-learning mechanics such as keyboarding. Even if formal extended school year services are not necessary for a student, assistive technology devices and, perhaps, some or all of a student's physical therapy equipment, may be needed during the summer for home use, whether or not the student receives extended school year services.

C. Narrow Eligibility Criteria

Often, even though multiple eligibility criteria must be considered, IEP teams will look only at regression/recoupment or will interpret other eligibility criteria restrictively. For example, while many situations might constitute "special circumstances" that would qualify a student for ESY services, some school systems define "special circumstances" in a particular way, such as lack of services during the year because of extended illness, and refuse to consider a student as eligible unless he or she meets that particular definition. Strong advocacy may be needed to persuade the IEP team to broaden its perspective. If a state has clear regulations or guidelines about ESY eligibility criteria, consideration could also be given to filing an IDEA complaint with the state education agency. If the law in a particular state is not clear, consideration could be given to litigating a case similar to those discussed in the first section of this document. 

D. Transportation

If a student needs transportation in order to attend an extended school year services program, then the school district is responsible for providing transportation as a related service, as it would be during the school year. See, e.g., Brent v. San Diego Unified District, No. 96-1377 (S.D. Ca. 1996) (25 IDELR 1)(temporary restraining order issued to require transportation of students to IEP recommended day treatment programs during the summer).

E. Lack of Service Providers

Sometimes IEP teams may make decisions about ESY services that are patently based on the availability of services and service providers, rather than on the needs of the individual student. Clearly, this is illegal. In the context of placement in the least restrictive environment, OSEP has repeatedly stated in policy letters that placement cannot be based on administrative convenience or the availability of service providers. See, e.g., Letter to Earnest (July 18, 1986), EHLR 211:417 (1978-87 Rulings, Policy Letters); Letter to Boschwitz (September 26, 1988), 213:215.  Additionally, question 31 in Appendix A of the IDEA regulations specifically states that a public agency must ensure that all services set forth in a student's IEP are provided, consistent with the child's needs as identified in the IEP. As with other IEP-based services, the school district is obligated to provide needed ESY services. The district can do this by contracting for those services, purchasing them from another school program, or hiring staff, for example. See, e.g. 34 C.F.R. Part 300, Appendix A, question 31. While the issue of ESY services based on service provider availability is certainly an issue that could be addressed in a due process hearing, if the student lives in a state with a viable complaint resolution process, consideration could be given to filing an IDEA complaint on behalf of the student or on behalf of the student and all other similarly situated students.

F. Lack of Assistive Technology or Therapy Equipment:

If a student's ESY program requires the provision of assistive technology devices or therapy equipment, the devices and pieces of equipment must be provided to the student. If a student's ESY services are provided at a location other than the school the student attends during the year, there may be a delay transferring the required items to the ESY program site or a subsequent delay transferring them back to the student's regular school site. It is good practice to identify an IEP team member or other school district staff member who will be responsible for ensuring that necessary equipment and devices are transferred to and from the ESY or that duplicate items are provided during the ESY program.

It is also important to ensure that the ESY service providers are familiar with and trained to use whatever assistive technology devices or pieces of equipment are required for a student's ESY program. Particularly if a school district has an assistive technology specialist who is not a full-time employee, the IEP team will need to ensure that ESY service providers are appropriately trained and knowledgeable enough to permit the student to use the devices or equipment safely and effectively. 

G. Consultative Versus Direct Services:

Sometimes, school districts attempt to shift the provision of ESY related services from a direct service model to a consultative model, in which the therapist consults with the special education providers, who then implement the related service. While consultative services are often provided during the school year and a continuation of consultative services might be perfectly appropriate during an ESY program, it is important to determine if goals or objectives that have been delivered by a related services provider during the school year are being recommended for consultative service provision for the summer. This is not necessarily illegal, but it may be a way for the school system to try to cover the fact that it does not have sufficient staff to provide necessary services.

As a general rule of thumb, a parent or advocate should ask if there is something about the objective or goal that requires it to be provided by a licensed related services provider for safety, clinical judgment, or other reasons. For example, a student whose IEP calls for her to learn to climb stairs might have an objective requiring her feet and hips to be aligned at a certain angle as she steps up or down a stair. If this objective is implemented by a physical therapist during the school year, but is recommended as an objective to be implemented by the ESY program teacher in consultation with the physical therapist during the summer, the parent or advocate may be able to argue successfully for direct service provision by the physical therapist by pointing out that the child could potentially be harmed by incorrect implementation of the objective. Improper alignment might lead to hip problems, or the child could be hurt if her weight is not balanced properly. These are issues that fall within the physical therapist's area of expertise and require a level of experience and clinical judgment that a special educator is unlikely to possess.


H. ESY Services v. Summer School:

Often, school districts run summer school remedial academic programs for students. These programs generally charge a fee and are open to student

Produced by Leslie Seid Margolis of the Maryland Disability Law Center with a grant from the Training Advocacy Support Center (TASC) at the National Association of Protection and Advocacy Systems, Inc., and presented at the NAPAS Conference, May 28-31, 2003, Washington, D.C.

Support for the development of this handbook comes from a federal interagency contract with the Administration on Developmental Disabilities (ADD), the Center for Mental Health Services (CMHS), and the Rehabilitation Services Administration (RSA).


Hear Ye! Hear Ye!

Braille Book Flea Market:

Donate your gently used but no longer needed Braille books to the 2005 Braille Book Flea Market, sponsored by the National Organization of Parents of Blind Children and the National Association to Promote the Use of Braille. Books should be in good condition. Cookbooks, Twin Vision books, and books suitable for children are needed. Begin your search through the boxes in your basement and spare room and get them ready for shipping to: UPS, 6716 Grade Lane, Suite 903, Louisville, Kentucky 40213, Att: Shawntay Jordan

If you have any questions, contact Peggy Chong at (515) 277 1288 or email her at <[email protected]>. Look for a Braille Book Flea Market update in the Braille Monitor very soon.

Attention Aspiring Leaders in the Education of Blind Children:

The National Organization of Parents of Blind Children (NOPBC) is serving as a public advisor to an important new initiative enhancing the doctoral studies of those interested in focusing on blindness–the National Center for Leadership in Visual Impairments (NCLVI). Recently established through a grant from the Office of Special Education Programs (OSEP), the NCLVI's purpose is to develop a collaborative model for training leadership personnel in special education with an emphasis on blindness. The plan is to establish a national consortium of doctoral institutions.

Through this project the NCLVI will assist in increasing the numbers of doctoral graduates available for positions in one or more areas of emphasis, such as higher education teaching and research; public policy; administration at national, state, and local levels; curriculum development; and general research. The NCLVI Fellows Program will bring together doctoral students for a unique set of enrichment activities that will deepen their understanding of issues in the field and strengthen their commitment to family, consumer, and professional partnerships.

The National Organization of Parents of Blind Children encourages those with a master's degree to seriously consider this creative opportunity to spark innovation and new leadership in the blindness field. Through the NCLVI, with the support of the NOPBC, the NFB, and our Jernigan Institute, we have another avenue to imagine a future full of opportunities.

Potential NCLVI Fellows must be accepted by one of the participating universities prior to applying for NCLVI Fellowship funding. The first cohort of NCLVI Fellows is slated to begin their graduate programs in September 2005, so those interested in getting into the program during the first year should act fast. Learn more about the NCLVI on the Web at <http://www.pco.edu/nclvi.htm>. For more information write to one of the NCLVI codirectors: Dr. Kathleen Mary Huebner ([email protected]) or Dr. Diane P. Wormsley ([email protected]) or call (215) 780-1360.

Participating universities include California State University; Teachers College, Columbia University; Florida State University; Northern Illinois University; Ohio State University; San Francisco State University; Texas Tech University at Lubbock; University of Arizona; University of Louisville; University of Northern Colorado; University of Pittsburgh; University of Utah; Vanderbilt University; and Western Michigan University. V