New Equal Rights Center Disability Campaign

Today April 12, 2011 the Equal Rights Center launched a new campaign in its efforts to eradicate discrimination. The focus of this campaign is to give people a forum through which they can learn more about accessibility.

Here is a link to the press release for this campaign:
Equal Rights Center Press Release

Here is a link to the website for the campaign :
Equal Rights Center Campaign Website

Here is a link to the story about advocacy efforts for our daughters:
Nicole and Josselin

Please visit the Equal Rights Center and give them your support. Please share with others.

Thank you for your advocacy efforts.

Greg

Two Teens Text Their Viewpoints on FM Systems

Some teenagers with hearing loss unfortunately seem get to a point where they view their FM systems as too much trouble. The FM system just adds to the already uncomfortable feeling of being different than everyone else. It takes so much extra time, effort, and personal responsibility to tote it around from class to class. Poor teacher in-service training and/or inadequate FM system procedures are wonderful at ensuring that usage problems plague the FM system all school year long.

This story shares a part of a text message exchange between two teens with hearing loss on the subject of FM systems in school. As we were walking our dog Norton one evening, our daughter Nicole was texting away in an exchange to try to convince another teen to look at her FM system in a new light. The other teen had pretty much decided to abandon her use of the FM system in school. As they finally agreed to disagree, they traded numbered lists with their closing arguments.

Here’s the other teen’s text message list of reasons against using her FM system:

1. When u have free time on doing work but u cant focus cuz the teacher is tlking into the mic

2. When ur tlking to ur frriends it really hard to hear it cuz the teacher is busy talking.

3. When its not on and the teacher is tlking its really embarassing to raise ur hand and randomly go the mic is off

4. when ur carrying it u drop it sometimes cuz u have to much stuff

5. When ur carrying u can also lose some parts of the mic.

6. It will give u detentions by mean teacher for no reason

and etc..

Here’s Nicole’s text message list in support of using her FM system:

1. You can hear almost evry thing

2. U don't miss out on much

3. U don't miss out on wut u don't know u missed out on (big/small)

4. Language feeds ur brain

5. U learn more even if its not on the test

6. U can sit wherever evr u want and still hear

7. U can sit in the center and hear evry 1 else bttr

8. U feel more confident because u kno wuts going on

9. U can close ur eyes and still kno wuts happenin

10. U hav bttr fluency when u speak

11. When u hear evrything u hav a bttr chance of having good answers when the teachr calls on u

Etc...

We are blessed that Nicole is an awesome self-advocate for her listening needs. Each day at the start of school, she picks up her FM system from the school nurse’s office. Then all day long she carries it from class to class, handing the mic/transmitter to each of her teachers and getting it back from the teacher when class is over. At the end of the school day, she also has to go back to the nurse’s office to plug the FM back into the charger, so it’ll be ready for another day. Sometimes it gets to Nicole a bit, that time pressure of getting to her next class and that unfairness of an extra burden that she alone has to bear because of her hearing loss. But it is part of her inner core now to value that spoken language connectedness to the world, and her FM system is a price she’s willing to pay to be able to listen as well as she possibly can.

This didn’t happen to Nicole overnight. As the parents of a baby with hearing loss, we began to learn the crucial importance of that auditory signal to our baby’s brain and her future potential. We filled our family life with advocacy efforts, often over and over and over again with education leadership that did not share our viewpoints of Nicole’s listening needs. A decade later we still must continue our parental advocacy over and over and over again, but now 13 year-old Nicole often leads the way.

Grandpa Hubert, who shares a genetic link with Nicole’s hearing loss, likes to ask his oldest son Greg: “Are you proud of her?”. Yes I am Dad, each and every minute of my life.

Ninety-One Percent IS NOT Appropriate for Our Children

Although we consider our daughter Nicole to have very strong listening skills from her cochlear implants and from her thriving with an auditory-verbal approach, her FM system at school cannot overcome the impact of adverse classroom listening conditions. During auditory testing, Nicole can score a hundred percent in quiet conditions. Throw background noise at her, and she quickly plummets like most children with hearing loss. With a +15 dBA signal-to-noise ratio, which is comparable to the benefit she receives from her FM system at school, she has never scored higher than ninety-one percent. Even though she is currently a straight A student, that ninety-one percent means Nicole is missing, through her listening abilities, almost ten percent which represents one out of every ten words.

Would you be willing to continue reading this story, if only ninety-one percent of the words were visible and the other almost ten percent were missing? What if, instead of one in ten words missing, those ten percent were seriously illegible instead of actually missing? That would make even more of a mental challenge for you by forcing your brain to work harder. You would need to struggle to determine whether your mind’s best guess for a word actually matched the illegible pattern that your eyes were trying to read for your brain. That’s what it’s like for our children in school.

I am willing to bet that most of you would “toss in the towel”, give up, and say it’s just not worth it. If you agree with me, then let me follow-up with the hard-hitting question of this story by asking you why you expect your own child to do more than you. Why do you expect your child to cope with classroom listening conditions where an FM system provides him/her with auditory access to only ninety-one percent or maybe even worse?

When it comes to the listening needs of our children, ninety-one percent is clearly not appropriate. Some of you might want to remind me that ninety-one percent is a heck of a lot better than the abysmal percentage Nicole would get without using an FM system. A score of ninety-one percent might even fit in the percentile range of an “A” in many schools’ academic grading systems. I whole-heartedly agree that Nicole greatly benefits from her FM, and we are very grateful that her teachers are generally supportive of using it.

But do not, for even one second, believe that Nicole or your own child is not paying a hefty price for that remaining percentage he/she does not hear. Let me repeat one of my favorite quotes of Dr. Mark Ross:

“Beware of underestimating the barrier that any type and degree of hearing impairment presents to the casual acquisition of information from the environment (Ross, 1991)."

Facilitating Hearing and Listening in Young Children
By Carol Flexer , Ph.D.
1994 Singular Publishing Group, Inc.

How incredibly overwhelming it must feel for our children when trying so hard to learn new academic material with new concepts and new vocabulary, all of it while missing ten percent of what’s being said. How lonely it must feel to be cut-off, again and again and again, from the language of the questions, answers and comments of the other students in the class. As inappropriate as the class clown’s joke might be, all the other students in the class have access to the language to be able to make a free choice whether or not to share in the laughter.

Although deaf-blind Helen Keller’s perspective was shaped by a much greater degree of communication isolation, I believe her words still ring so very true today in relation to our children with hearing loss:

“Hearing is the soul of knowledge and information of a high order. To be cut off from hearing is to be isolated indeed."

Gallaudet University’s Library Website
http://library.gallaudet.edu/Library/Deaf_Research_Help/Frequently_Asked_Questions_(FAQs)/People/Helen_Keller_quotes.html
The webpage cites the source of this quote to be an article by Jean Christie, "Keller, Helen", in the Gallaudet encyclopedia of deaf people and deafness (New York: McGraw-Hill, 1987, vol.2, p.125)

Even if our children get straight As, they still need to devote more brain energy to decode the language being spoken. That leaves less time and energy for language comprehension, for analysis and higher-level thinking, and even for mental activities outside of class. Please think a bit more about mental activities outside of class, and reflect on how well you do when you’re mentally exhausted. In our house, everyone knows well what happens to dad’s mental state, mostly in the area of patience, as he gets tired. If our children get more fatigued, each and every day, due to adverse listening conditions in class, what are the long-term impacts on positive attitude toward school and education? What are the additional impacts on social/emotional health if the fatigue spills over into the quality of peer interactions between classes and after school?

Please don’t buy-in to the baloney that all is well if our children are getting As and Bs on their report cards. Our own school district’s mission statement says our mission is “to develop the full potential of each student’s intellectual, ethical, physical, creative, cultural, social and technological capabilities.” To me, that makes it sound like our children who miss ten percent are being expected to join the Mission Impossible team. Even if they are overflowing with self-confidence and determination for the challenge, that doesn’t make ninety-one percent appropriate.

Communication and interpersonal skills are some of the most highly valued skills that employers seek in their employees. Our quality of life is in large part directly related to our ability to be successful team members within communities of people --- family, friends, and society. How do you master those skills while missing ten percent?

IDEA 2004 recognizes that it is more than an issue of academic grades when it states in Section 300.324 (iv) that the IEP Team must consider “The academic, developmental, and functional needs of the child.”

In Part 104.4 of the Section 504 regulations, I don’t read anything to indicate that discrimination is limited to only matters of academic grades when it states “No qualified handicapped person shall, on the basis of handicap, be excluded from participation in, be denied the benefits of, or otherwise be subjected to discrimination under any program or activity which receives Federal financial assistance.”

Please let me try to wrap this story up with my hope that I’ve challenged your thinking about the listening needs of our children in school. Parents, we must join together to advocate and make a difference in the classroom acoustics/listening conditions for our children.

We need thousands of parent letters to the United States Access Board to remind them that barrier-free must not exclude the invisible listening needs of our children with a hearing loss disability. Full access to communication and language is a fundamental human right. Please write to Mr. David Capozzi, the Executive Director, and Mr. Douglas Anderson, Board Chair.

United States Access Board
1331 F Street, NW, Suite 1000
Washington, DC 20004-1111
http://www.access-board.gov/

Please express your gratitude to the American Speech-Language-Hearing Association (ASHA) for making classroom acoustics a national priority of their public policy agenda. Join the Classroom Acoustics Coalition on Facebook that ASHA’s Neil Snyder created.

American Speech-Language-Hearing Association
2200 Research Boulevard
Rockville, MD 20850-3289
http://www.asha.org/

We need those of you who are members of the Alexander Graham Bell Association for Deaf and the Hearing Loss Association to advocate within your organizations for making classroom listening conditions a priority. Please give your support to AG Bell and the Hearing Loss Association, and urge the national organization and local chapters to actively advocate for the classroom listening needs of our children. Get personally involved.

Alexander Graham Bell Association for the Deaf and Hard of Hearing
3417 Volta Place, NW
Washington, DC 20007
http://www.agbell.org/

Hearing Loss Association of America
7910 Woodmont Ave, Suite 1200
Bethesda, MD 20814
http://www.hearingloss.org/

Please join me in expressing gratitude to Hands and Voices for their help in putting classroom acoustics back in the spotlight by publishing a front page story this Spring 2009. Also please remember that communication access is not only an auditory issue. Communication access is a vital issue for the children of all families who are using a variety of communication modalities based on their family needs and choices. All of our children feel the same kinds of impacts from communication isolation, so please join with the families of children who depend on note takers, CART, cueing, signing, listening, and everything else. Advocate together for the right of access to communication and language that almost everyone else in our society takes so much for granted.

Hands & Voices
PO Box 3093
Boulder CO 80307
http://www.handsandvoices.org/

Feel free to contact me if you have thoughts or questions. Post a comment on the blog. If you email me and I’m late in responding to your message at my gmail account, please write to me at my primary account “gregoryLhubert at att.net”. Change the “ at “ to “@” to help me in my effort to keep the email spammers away. :-)

May God bless you for all your efforts on behalf of our children.

Recommended Books

Daily life with three children out of school for the summer plus a summer full of continued school district meetings, preparations, emails, letters, and worries have me struggling to complete my next story for this blog.

I just met another parent this week who was unsure of the importance of advocating for the listening needs of their child in school. Apparently their child is feeling too embarrassed to use the FM system but is still getting As and Bs. Why not just leave well enough alone?

While I try to get over my hump with my next story to be able to more fully answer that “why not just leave well enough alone” question that I have heard so many times, please let me share these three books that I highly recommend for parents whose children depend on their technology-aided listening abilities.

Sound Field Amplification: Application to Speech Perception and Classroom Acoustics, 2nd Edition
By Carl Crandell, PhD, Joseph Smaldino, PhD, and Carol Flexer, PhD
2005 Thomson Delmar Learning

If you simply read Chapter 1 “Rationale for the Use of Sound Field Systems in Classrooms”, this will help give you a better understanding of the critical importance of your child’s listening in the classroom.

Some quotes from chapter 1:

“If children cannot consistently and clearly hear the teacher, the major premise of the educational system is undermined.”

“Even in a front-row center seat, the loss of critical speech information is noteworthy for a child who needs accurate date entry to learn. The most sophisticated of hearing aids or cochlear implants cannot recreate those components of the speech signal that have been lost in transmission across the physical space of the classroom.”

“Hearing is a first-order event in a mainstream classroom. If a child cannot clearly hear spoken instruction, the entire premise of the educational system is undermined. Due to poor acoustic conditions and a variety of hearing and attending problems, there are millions of children who are being denied an appropriate education.”

Facilitating Hearing and Listening in Young Children
By Carol Flexer, PhD
1994 Singular Publishing Group, Inc.

This is an old book now, but it has an awesome couple of pages in chapter 1 on the subject of incidental learning and its impact on language, academic and social/emotional development. Not enough has been written for parents on this subject of incidental learning. In my experience, most parents are simply not aware and not educated regarding the vital nature of incidental learning to their children.

On page 14: “Beware of underestimating the barrier that any type and degree of hearing impairment presents to the casual acquisition of information from the environment (Ross, 1991)"

The Human Right to Language: Communication Access for Deaf Children
By Lawrence M. Siegel
2008 Gallaudet University Press

Once you understand the communication and language that your child is missing due to poor classroom acoustics, inadequate amplification, etc., this is a book to spark your passion for advocacy.

We would never accept the isolation of a student with a physical mobility disability by telling that student to stop at the classroom doorway and try to participate in the classroom instruction from that distant location. We would never accept turning down the lights on a student with vision disability who depends on adequate lighting. Why then do we continue to accept the isolation of our children with hearing loss when we provide them incomplete access to the vital communications of their classroom teacher and classroom peers?

From the back cover of the book:

“In 1982, the United States Supreme Court ruled that Amy Rowley, a deaf six-year old, was not entitled to have a sign language interpreter in her public school classroom. Lawrence M. Siegel wholeheartedly disagrees with this decision in these pages. Instead, he contends that the United States Constitution should protect every deaf and hard of hearing child’s right to communication and language as part of an individual’s right to liberty. Siegel argues that when a deaf or hard of hearing child sits alone in a crowded classroom and is unable to access the rich and varied communication about her, the child is denied any chance of success in life.”

ASHA Classroom Acoustics Website Links

Here are two links to ASHA website pages on the classroom acoustics advocacy effort:

Congress Acts on Classroom Acoustics

http://www.asha.org/Publications/leader/2009/090714/090714c.htm

ASHA Hosts Capitol Hill Briefing on Classroom Noise and Acoustics

http://www.asha.org/News/Advocacy/2009/CapHillBriefingClassNoiseAcoustics.htm

(Note: The ASHA website links changed and were updated on this page by Greg on July 16, 2010)

Classroom Noise & Acoustics Briefing - May 15 on Capitol Hill

Classroom Noise & Acoustics Briefing
The Unseen Barrier to Learning

Sponsored by: The American Speech-Language-Hearing Association

Friday, May 15, 2009

2203 Rayburn House Office Building
Capitol Hill, Washington, D.C.

TENTATIVE AGENDA

10:00 am Welcome & opening remarks
Congresswoman Carolyn McCarthy (D-NY)
Co-Chair, Congressional Hearing Health Caucus

10:10 am Panel Introduction by Arlene A. Pietranton, PhD, CAE, Executive Director of ASHA
1. Greg & Nicole Hubert, Naperville, Illinois (Parent & Child)
2. Marcus Adrian, AIA, Principal, Mackey Mitchell Architects, St. Louis, MO (Architect)
3. Dr. Ken Roy, Armstrong Worldwide Industries, Lancaster, PA (Acoustician)
4. Dr. Peggy Nelson, Audiologist, University of Minnesota
5. David M. Capozzi, Executive Director & Elizabeth Stewart Chairwoman of the Classroom Acoustics Committee, United States Access Board (Confirmed)

11:00 am Audience Q&A (Neil Snyder, ASHA)

11:30 am Adjournment

For more information, please contact:

Neil Snyder, Director of Federal Advocacy
American Speech-Language-Hearing Association
444 North Capitol Street, N.W.
Suite 715
Washington, D.C. 20001
Phone: 202-624-7750
Fax: 202-624-5955
http://www.asha.org/

Classroom Acoustics: The Untreated Learning Environment

My story on classroom listening conditions (classroom acoustics) is published in the Spring 2009 issue of the "Hands & Voices Communicator" Volume XII - Issue 3.

Here's the link to the story posted on the Hands and Voices website:
https://handsandvoices.org/articles/tech/V12-3_acousticsHubert.htm