Refocusing on Choices Amidst renewed debate about teaching signed versus spoken language to children who are deaf, a cadre of professionals calls for emphasizing all forms of early language access. Features
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Features  |   May 01, 2016
Refocusing on Choices
Author Notes
  • Elizabeth Thompson Beckley is a freelance medical writer in Evergreen, Colorado. beckley_family@me.com
    Elizabeth Thompson Beckley is a freelance medical writer in Evergreen, Colorado. beckley_family@me.com×
Article Information
Hearing Disorders / Speech, Voice & Prosody / Features
Features   |   May 01, 2016
Refocusing on Choices
The ASHA Leader, May 2016, Vol. 21, 44-49. doi:10.1044/leader.FTR1.21052016.44
The ASHA Leader, May 2016, Vol. 21, 44-49. doi:10.1044/leader.FTR1.21052016.44
Should all children who are deaf be taught sign language as a matter of course? Ultimately this approach “seems clearly preferable to an approach that focuses solely on oral communication,” indicated a Pediatrics article published last June. With this statement, the article reignited a debate over signed versus spoken language as the best communication modality for the families of these children.
Even though Pediatrics published a correction in October that omits this arguably controversial sentence, reactions to the article remained heated. But not all those who read the article interpreted it to mean that all children who are deaf should learn sign language. “I don’t think it says that at all,” says Karl White, a professor of psychology at Utah State University in Logan and founding director of the National Center for Hearing Assessment and Management based there.
The original abstract may leave one with that impression, he continues, but the article itself includes different opinions. Therein lies the crux. The community of professionals who treat and counsel families of children who are deaf and hard of hearing may have wildly divergent attitudes toward sign language. But, says White, the most important opinion is that of the families, who ultimately make the decisions affecting their family for a lifetime.
“I’ve been in this field a long, long time,” White says. “It is still amazing how angry people get. Such anger only damages children. People need to recognize that parents should have choices and need to be supported. What kind of language parents choose will be different, but they shouldn’t be judged.”

“It is still amazing how angry people get. Such anger only damages children. People need to recognize that parents should have choices and need to be supported.”

Support, not judgment
Too much fear and judgment and not enough support can make early decisions a struggle for the families of children who are deaf, agrees Donna Jo Napoli, a professor of linguistics at Swarthmore College in Pennsylvania and lead author of the corrected Pediatrics article.
In her contribution to the piece, co-written with Theresa Handley, recently retired from Swarthmore. Napoli contends that being taught sign in conjunction with spoken language maximizes chances for developing a firm linguistic foundation. “Sign and speech facilitate each other, rather than one hindering the other,” Napoli and Handley write.
Yet other professionals and families believe that listening and spoken language is the right way to help people who are deaf and hard of hearing navigate successfully in a hearing world. Auditory/oral or listening and spoken language systems rely on early and appropriate amplification of the child’s residual hearing (or cochlear implantation), early training of the family on the importance of consistent device use, and auditory/language skill development. The goal is to maintain a typical trajectory of speech and language development.
Some of the opinions in the Pediatrics feature eschew dependence on sign language for families who elect cochlear implants (CIs), advocating instead for educational programs that emphasize listening and spoken language before and after implantation.

The Joint Commission recommends that professionals counseling the families of children who are deaf present all communication options and available hearing technologies in an unbiased manner.

“Reliance on sign language over an extended period of time may negatively affect the child’s capacity to learn spoken language after cochlear implantation,” write Nancy Mellon, head of The River School in Washington, D.C., and John Niparko, an otolaryngologist at the University of Southern California in Los Angeles, in a joint opinion. “Even extensive rehabilitative efforts will not produce the language sophistication that can be achieved by exposure to spoken language during sensitive periods of development.”
However, many in the deaf and hard of hearing community support the use of sign language. They contend that the strict teaching of listening and spoken language inhibits the ability of students who are deaf to communicate in what some consider their native language, or when cochlear implants are not an option or not working. Some have even called the attempts to eliminate sign language the equivalent of cultural genocide.
Napoli asserts that achieving a positive attitude about being deaf helps people establish a healthy identity, and that sign language is one way to help them interact comfortably with others who are deaf.
“My perception is that the ordinary person—and most of us are the ordinary person—has very little contact with people [who are deaf] or signing, and therefore has a kind of historical attitude … that people who are deaf are missing out somehow,” Napoli says. “This feeling makes the new parent very frightened when they find out their child is deaf. They want very much for their child to have all the opportunities that any child would have. They want to do the very best for their child. And sometimes they think the best they can do is to bring their child into the hearing world any way they can.”
Informed decision-making
Providing families with the relevant, objective and evidence-based information they need to make the best decisions for their children and their families is a process, not a one-time event, says Margaret Winter, associate professor of clinical otolaryngology at the Keck School of Medicine of the University of Southern California in Los Angeles, and her colleague there, education specialist Debra Schrader.
“[The process] is best done by meeting parents where they are and moving forward as we all continue to learn about their child,” Winter says. She and Schrader advocate for helping the hearing parents of deaf children understand that the development of both signed and spoken language require intense participation.
The goal in early intervention is the implementation of an informed decision-making process over time, concurs Mary Pat Moeller, director of the Center for Childhood Deafness at Boys Town National Research Hospital in Omaha, Nebraska. That becomes more complicated when families hear different points of view presented as a dichotomy, she says.
“In fact, parents make lots of choices as their children grow, and they get to know their child based on different approaches and resources,” Moeller says. “It is incumbent on us to provide lots of dialogue, experience and opportunities that build that informed decision-making. The art of that is getting to know their child, and also to have good supports around them.”

“Sign and speech facilitate each other, rather than one hindering the other.”

Family-to-family assistance is one of the best things professionals can provide, Moeller continues. Connecting families who have newly identified infants with other families who have different experiences and perspectives can be tremendously helpful, she says. In addition, families should have opportunities to meet and hear the perspectives of adults who are deaf and hard of hearing. Often meeting successful, older children or adults can provide hope where there is sometimes confusion or worry.
“Families have told us that exposure to people who communicate in different ways with different degrees of hearing loss and different technology helps parents determine what their next steps are going to be,” says Patti F. Martin, director of audiology and speech pathology at Arkansas Children’s Hospital in Little Rock. Martin agrees with Moeller about the significance of the hopefulness such interactions can offer.
“Many parents don’t know the possibilities,” Martin says. “It is so important for us to provide access to other individuals who are deaf and hard of hearing as mentors and role models.”
Key intervention years
Early intervention is almost a mantra with regard to identifying and supporting this population. The commonly cited critical age window for language development is 0–3 years. Many experts agree that without timely and appropriate opportunities to learn language—whether signed or spoken—children born deaf or hard of hearing face an uphill battle to engage with the world at an equal level with their hearing peers.
Without learning language, they will fall behind in communication, cognition, reading and social-emotional development, according to the 2007 position statement from the Joint Committee on Infant Hearing. The goal of early hearing detection and intervention (EHDI) “is to maximize linguistic competence and literacy development for children who are deaf or hard of hearing.” The Joint Committee reports that when EHDI occurs before 6 months of age, those infants later perform as much as 20–40 percentile points higher than those who don’t receive it on school-related measures for vocabulary, articulation, intelligibility, social adjustment and behavior.
With advances in hearing screening technology, universal screening of all infants through the EHDI system has nearly been achieved. According to data from the Centers for Disease Control and Prevention (CDC), 97.2 percent of newborn infants in the United States in 2013 were screened for hearing loss before being discharged from the hospital. Of those, 53,512 infants did not pass the hearing screening. Yet state EHDI programs did not have documentation that 36.6 percent of the children who failed the initial screening were receiving any early intervention services, according to the 2013 CDC survey.
State EHDI coordinators report several reasons for this lack of documented early intervention services: the failure to communicate to families in a culturally sensitive and understandable way, a lack of state data-management and -tracking systems, and a shortage of facilities and trained personnel to provide appropriate follow-up and intervention.
The National Center for Hearing Assessment and Management at Utah State University is the national technical resource center for all state-based newborn EHDI programs, operating under a cooperative agreement with the Maternal and Child Health Bureau of the federal Health Resources and Services Administration. According to White, who directs the center, 95 percent of children with hearing loss have hearing parents who are not sure what to do.

“Many parents don’t know the possibilities. It is so important for us to provide access to other individuals who are deaf and hard of hearing as mentors and role models.”

It is unfortunate, he says, that in many parts of the country, those parents will be directed to only one path: Your child has to get a CI, or your child has to learn sign language.
“Both are wrong,” White says. “Parents have options and should be supported in whatever decision they make. The bottom line is that language development is extremely important, and the way children learn best is by having fluent language models all day long.”
What’s most important is that families understand they need to work hard at whatever choice they make, White says. If they opt for a CI, it’s not just having the surgery and then being finished. The technology needs to be monitored and adjusted frequently for the growing child, and the family needs to continue working with the child on speech. Similarly, if a family elects sign language, the whole family needs to become fluent in sign language. Problems occur if parents don’t become fluent, he notes.
Among the many advantages of early diagnosis is the extra time it allows to explore communication options, say Moeller and Martin. “When families have opportunities to try different choices, they can evaluate the goodness of that fit for them,” Moeller says.
Audiologist Lisa Satterfield, associate director of ASHA’s National Center for Evidence-Based Practice, agrees that one size does not fit all. Cultural and social circumstances need to be considered, says Satterfield, an audiologist who formerly worked with California’s Medicaid cochlear implant program and hearing screening program.
“You can’t say every kid needs ‘this,’” Satterfield says. “I found in California we were working with a large immigrant population, where English was barely a second language, or parents were working two jobs, and had other kids. They didn’t have the resources or the time to learn sign language in addition to English and deal with the other factors in life.”

“Our responsibility is to provide parents with information—not just about what is close and available, but about all opportunities their children might have.”

The access issue
Access to services is another major factor in the choices a family makes, with geography playing a significant role in the availability of certain programs or technology.
“If you’re born in an area in central Illinois where there is not a teacher of people who are deaf, you might be lucky to get an SLP who took some sign in college, but is not fluent in the language,” Satterfield notes. “Variables like that can make a huge impact on whether they are learning sign or not.”
Access is a different question than the one about how to communicate with your child, Martin adds. And access should not determine the information provided to parents.
“Fundamentally, as professionals, our responsibility is to provide families with information—not just about what is close and available, but about all opportunities their children might have to communicate,” Martin says. “We have seen parents do amazing things to get access for their children. They should not be told only what is close or convenient for them.”
The bottom line, Satterfield says, is that clinicians need to be confident in their clinical judgment and cognizant of the child and the family situation when talking about communication opportunities. The Joint Commission recommends that professionals counseling the families of children who are deaf present all communication opportunities and available hearing technologies in an unbiased manner.
“We have a shared responsibility to help a family learn and find out what works well for them and their child over time,” Moeller says. “It is a process of the family learning and becoming observant and working closely with their team. Are we making the kind of progress we expect? Do we need to re-evaluate? There are lots of ways to head. Which leads us to success?”
The child’s interests and success should lead the way, says Napoli. “We want our children [who are deaf and hard of hearing] to be alive cognitively and have strong identities and learn to read and be productive members of society,” Napoli says. “I’m not the parent of a deaf child. It is easy to say what we would do ‘if,’ but we don’t know. But I definitely know I would want my child to have every opportunity.”
A Parent Finds Her Own Way

When Rachel Coleman’s daughter Leah was diagnosed with deafness at 14 months, she and her husband were warned against signing with her. They were told it would become a “crutch,” and she would never develop speech. This didn’t sit well with Coleman, a Salt Lake City-based actress and musician, who at the time was writing music and performing with her folk rock band.

“Leah is profoundly deaf. She is 1 year old. She may never develop speech. She does not have language,” Coleman recalls thinking. “We lost a year, and I need to do whatever I can to get her language now. It made no sense to me to try to get her to say words in English, words that she had never heard. There was no context for it.”

Disappointed in the advice of clinicians—which they found to be insensitive and inapplicable—Coleman and her husband began teaching Leah American Sign Language (ASL) as quickly as they could learn it themselves. She and her sister noted a dearth of resources for teaching sign language, so they made a video to help their extended family and friends learn ASL so they could all better communicate with Leah. Eventually, this grew into a video series called Signing Time, designed to teach all children sign language.

Though they had initially rejected suggestions to focus on speech, once Leah was fluent in ASL and fluent in reading and writing English, Coleman and her husband opted for cochlear implantation when Leah was 6 years old. They were encouraged by their daughter’s enthusiasm for it, despite objections that she was a “terrible implant candidate.” And they continued to sign with her despite clinicians’ advice to stop doing so. Leah is now an ASL/English bilingual, speaking 19-year-old scholarship student at the Rochester Institute of Technology.

Watch the ASHA blog in early May for the story of a parent who opted for early cochlear implanatation and a focus on listening and spoken language for her child.

Pursuing Both Signing and Speaking: One State’s Example

Because there is no guarantee that a hearing aid or cochlear implant is going to work for every child, the California Department of Education (CDE) encourages families who are willing and able to pursue both signed and spoken languages.

“If you give a child sign language, it’s not going to prevent them from learning to speak, and will give them language during that all-important time of 0 to 3 [years],” says Nancy Grosz Sager, CDE’s Deaf and Hard of Hearing Programs consultant. “It is important that we give up this argument. We need to encourage parents to pursue both paths, and that will lead to success for their children.”

She says the belief system at the CDE is that parents should not be compelled to choose between spoken and signed language, and may choose to do both. Of course some families will choose to do one or the other, and that choice should also be supported by early development professionals, Sager says.

The CDE provides a 12-page Parents Resource Guide, available in English and Spanish for parents of children who are deaf and hard of hearing. The parent authors present educational philosophies—including the American Sign Language/English bilingual approach, the listening and spoken language approach (oral deaf education), and the total communication approach (which uses all modes of communication at the same time)—with a table detailing four kinds of communication tools, such as visual supplements to spoken English (cued speech) and auditory access technology (cochlear implants and digital hearing aids). Sager says families are able to understand these communication opportunities “amazingly.”

“What the parents did was very revolutionary,” she says.

Resources
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3 Comments
May 3, 2016
Susan Raad
Lingering Disconnections
My son was implanted 21 years ago - amidst enormous backlash from the Public Schools, NAD, etc. It is stunning that there still remains such a disconnect in most environments between Cued Speech, ASL, Oral, etc. Rare is the professional that recognizes that a number of approaches can be carefully utilized at various points of development to supplement the pursuit of listening and spoken language. I believed so strongly in giving my son the opportunity to use spoken language - that I co-founded the premier Oral school for the Deaf in the Chicago area. It was a gift that shaped his life. I am forever grateful to these talented professionals. Without this intense intervention, he would not have succeeded orally to the degree that he has. On the other hand, I remain so disappointed that there remains an "either - or" debate. Cued speech had it's valuable place in differentiating certain phonemes when confused. He needed to know how to use some basic sign while at the swimming pool as a child. I wish that more Public Schools understood that throwing kids together in a TC class does not cover their bases in both sign and oral development. I regret not using more sign with him pre-implant. Let's start the dialogue that opens up ways to supplement oral language development without demonizing the careful use of other approaches in the process. And let's stop the "All deaf children need sign" mantra. We, as profeesionals, remain disconnected in a complex area which would benefit from blurring the philosophical battle lines just a little for some kids. Not all. Some. :-) S. Raad, M.A., CCC-SLP
May 4, 2016
Elizabeth Rosenzweig
Refocus on Research, Not Rhetoric
While parents of children with hearing loss absolutely have the right to choose the communication method that is best for their child and their family, I was disappointed to see an article that supposedly “focused on options” containing so much unsubstantiated information and, worse, offensive assumptions about family choice that are counter to ASHA’s mission as both a promoter of scientific progress in the field of communication disorders and a protector of clients’ rights. Several times in this article, various interviewees make statements claiming that the use of sign language supports spoken language development in children with hearing loss, though no citations are provided to support their claims. In fact, there is a large body of evidence showing quite the opposite. Nittrouer (2009) found that when sign language was used to supplement spoken language, there was no additive beneficial effect on the spoken language of children identified with hearing loss below one year of age. However, for children identified at one year of age or older, there is a negative effect—that is, when you combine spoken language and sign language in children over one year of age, their spoken language suffers. Beyond infancy, outcomes for children with hearing loss consistently demonstrate greater speech, language, and auditory abilities in children who use a listening and spoken language approach when compared with those who use communication methods incorporating manual language (e.g. total communication or bilingual-bicultural education programs) (see Tobey et al., 2003, Hodges et al., 1999, Geers et al., 2003, Sarant et al., 2001, among others). Parents and families deserve unbiased information about the methods, goals, and outcomes of all communication methodologies, and based on the child and family situation, one method may be more preferable than others, but it is disingenuous of us as professionals to pretend that all methods lead to the same result. They don’t. Our job is to help parents identify their goals for their child (e.g. communicate independently, develop intelligible speech, become a part of the Deaf culture) and choose the approach that will help achieve them. But more disturbing than the article’s lack of research to support its claims are the disrespectful assumptions and insinuations made about the motivations of parents who choose an auditory verbal approach. The article includes such tired old saws as: Parents choose an auditory verbal approach out of ignorance about hearing loss and assumptions that people who are deaf are somehow lacking (Give parents some credit! They do their research and make the right choice for their families.) Parents choosing an auditory verbal approach are attempting to make their children fit into the hearing world (There is no “hearing world.” There is one world, and the majority of people communicate using listening and spoken language. Parents choosing this approach are simply giving their children the widest possible number of communication partners and teaching their child the language(s) of their hearts and their homes, in which they are already able to provide fluent models.) Sign language is the “native language” of children with hearing loss (This is a fallacy that should never see the light of day, let alone be worthy of printing in publication of speech-language-hearing professionals. As leaders in the field of child language acquisition, ASHA should know full well that all children are born with the ability to learn any language, and only later differentiate due to environmental exposure to fluent language models.) Sign language is the only way for children with hearing loss to develop positive self-concept and connect with others who are deaf or hard of hearing (There are many programs and organizations, such as the Leadership Opportunities For Teens program, that provide opportunities for listening and speaking children with hearing loss to connect. Percy-Smith et al., 2008 found that cochlear implant recipients using listening and spoken language had “considerably better odds of having a high level of social well being” when compared to signing peers.) Eschewing sign language for children with hearing loss is genocide (Providing medical devices and (re)habilitation to a child with a disability is not genocide. It never has been and never will be. Continuing to use inflammatory language like this, in 2016 when the “debate” over cochlear implants has long since finished, only serves to divide, not drive our field forward. Why give any more air time to such offensive language?) Instead of continuing to run in circles with a debate that, quite frankly, is over (90% of families are choosing a listening and spoken language approach, according to data gathered by North Carolina’s BEGINNINGS early intervention system), we should devote our time and energy to finding research-based solutions that help all families of children with hearing loss succeed. More research is needed in identifying best practices in all methods of communication, determining which biobehavioral markers are most predictive of communicative success, improving cochlear implant and hearing aid technology, ensuring that every family of a child with hearing loss receives unbiased information about all of their options and access to high quality services to help them become great at whichever method they choose, and meeting the overwhelming demand for qualified providers to serve these families. Families don’t need debate, they need solutions. Forget the rhetoric. Refocus on research. Elizabeth Rosenzweig MS CCC-SLP LSLS Cert. AVT www.AuditoryVerbalTherapy.net
May 5, 2016
Rachel Friedman Narr
Evidence and reality
It's no mystery to anyone that you can make your point using "data" and "research" that fits your point (as evidenced in the comment above). Here's some recent research that supports the comments in the article, including some of the fMRI brain-based research coming from Pettito's BL2 lab: Davidson, Lillo-Martin & Chen Pichler, 2014; Hassanzadeh 2012; Jasińska & Petitto, 2013; Kovelman, Shalinsky, White, Schmitt, Berens, Paymer, & Petitto, 2009. This is just the tip of the iceberg. BUT- even if we can use research to fit our points...let's just look at the socio-emotional and humanistic side of this conversation. There is absolutely no harm in any child learning signs, whether they are "baby signs" or ASL. SLPs have been using signs to facilitate spoken language forever. No one questioned that approach. It's only when the baby is deaf that the approach is questioned and literally FORBIDDEN. We hear from families ALL the time, before the birth of their baby, they were planning to learn and teach baby signs, but the minute the baby is identified as deaf or hard of hearing, the professionals (yes, that's US) tell the parent "DON'T SIGN." Why? The socio-emotional toll this takes on DHH children AND THEIR families is unreal. (Talk to any 10 Deaf adults and hear their stories. They might be "oral" and "speak well" but there was a socio-emotional cost to that. Talk to 10 parents of children with CIs who are not working yet. Why are they celebrating ONE WORD spoken when a child is 5 years old? Would ANY SLP accept that in any other field? ) Why CAN'T DHH children be bilingual? Why do we insist on withholding language from babies? The point of the original article and practically the whole EHDI conference was DO IT ALL!! Yes!! Today many DHH babies are able to learn to listen and speak! And guess what? They can also learn ASL at the same time. There is no harm and there is no risk to the baby or their family. You know who IS at risk? YOU...professionals who can't acknowledge that their training and perspective for all these years, is in fact, flawed. I encourage you to broaden your world view, and broaden your view of what PEOPLE can accomplish, including deaf/hard of hearing babies. There really is no rational reason we are still having this debate. ~Rachel Friedman Narr, Ph.D. CCC/SLP
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May 2016
Volume 21, Issue 5