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26 Collaborative Team Management of Children with Hearing Loss

Madell et al., Pediatric Audiology: Diagnosis, Technology, and Management, 3rd Ed. (ISBN 978-1-62623-401-7), copyright © 2019 Thieme Medical Publishers. All rights reserved. Usage subject to terms and conditions of license.

appropriately. In some schools, the educational audiologist is responsible for educating classroom teachers about hearing loss and maximizing learning in the classroom for children with hearing loss (see Chapter 32). In other schools, training school personnel is the responsibility of the teacher of the deaf (TOD). In some cases, the educational audiologist may provide all the audiology services a child requires, and the child may not receive audiologic services from an outside clinic or hospital. In other cases, the school audiologist will not deal with personal technology and will deal only with school equipment.

Pearl

If an educational audiologist is not employed by the school district, the child’s clinical audiologist may have to provide the services that are the responsibility of the educational audiologist in other districts.

26.1.3 Medical Professionals

Every child with hearing loss will receive medical services from at least two physicians: a pediatrician or family practitioner, and an otolaryngologist. The pediatrician will manage routine medical issues, and the otolaryngologist will be responsible for ear issues.

Infants with hearing loss ought to have the beneﬁt of a medical

home, which the American Academy of Pediatrics (AAP) deﬁnes as an approach to providing health care services where care is “acces-

sible, family-centered, continuous, comprehensive, coordinated,

compassionate, and culturally competent.”9 For most children, the

medical home will reside with the pediatrician; however, this may not be the case for every child. Most pediatricians have little or no experience with children with hearing loss.

All children with hearing loss should see an otolaryngologist at least annually. Obviously, it is necessary for pediatricians and otolaryngologists to work well together so that medical issues can be treated in a timely fashion. These key physicians will be responsible for making referrals to other medical personnel as needed, including referrals for genetics evaluations, neurology, and ophthalmology consultation. (See Chapter 4 for a complete discussion of medical management of the child with hearing loss.)

26.1.4 Speech-Language-Auditory

An SLP with speciﬁc training in the provision of auditory therapy for children with hearing loss, or a Listening and Spoken Language Specialist (LSL S), needs to be involved in the evaluation and management of all children with hearing loss (see Chapter

29). As soon as the hearing loss is identiﬁed and at least annually

thereafter, the child’s speech-language skills and functional listening skills should be assessed. This evaluation will include assessing and monitoring the child’s performance with the

Therapist

technology and participating in determining the need to change technology (e.g., to new or more powerful hearing aids [HAs] or to shift from HAs to cochlear implants [CIs]).

After speech-language and auditory assessments are con-

ducted, recommendations are made for appropriate therapies and

or providing training and coaching to parents to enable them to

f carry therapy over at home. The SLP can also assist in training a child to perform conditioned play and loudness balancing, which will facilitate audiologic evaluations. When a child reaches school age, services may move from the clinic to the school. However, if the school SLP does not have the skills to work with children with hearing loss, it may be necessary for the child to continue to receive services outside the school environment or to train school personnel to work with children with hearing loss.

26.1.5 Educational Personnel

A TOD typically is involved in the management of all school-aged children with hearing loss. (The title of this teacher may vary;

forms include “teacher of the deaf,” “teacher of the hearing-impaired,” and “teacher of the deaf or hard of hearing.”) In some

areas of the country, a TOD will be involved with preschool children also (see Chapter 30). For children enrolled in self-con- tained classes for children with hearing loss, the TOD will be the primary provider of educational services. For children who are mainstreamed, a general education teacher will be responsible for providing academic instruction.10 As a support, the TOD may provide individual or resource room instruction on a daily basis or several times per week to preview material that will be covered in the mainstream class and to review material previously covered. The TOD, in some schools, also will be responsible for monitoring the RM equipment and for teaching the regular

school sta about HAs, CIs, and RM systems.

26.1.6 Social Worker

Social workers meet with newly diagnosed families to help them deal with their feelings about having a child with hearing loss and to help them work through the paperwork involved in procuring services and technology for their children. Social workers can help families enroll in early intervention, obtain Medicaid funding as appropriate, and navigate insurance issues. In some centers, they work with families who are trying to decide the value of shifting from HAs to CIs. They provide crisis intervention

for families: when a hearing loss is identiﬁed, when a child has a

decrease in hearing or a CI device failure, or when family issues occur that are not related to hearing loss. In some centers, the social worker may run support groups for teenagers and for parents. Support groups could be run by the social worker alone

or collaboratively with other sta members.

26.1.7 Psychologist

School systems and other clinics may have an educational psychologist who evaluates children on a regular basis (usually

281

IV Educational and Clinical Management of Hearing Loss in Children

_____Cochlear Corp. _____Advanced Bionics _____MED-EL

every 3 years) to assess learning strengths and weaknesses and to make recommendations for educational placement and

special service needs. Psychologists also may oer the support

services provided by social workers as described in the preceding paragraph, including counseling for newly diagnosed hearing loss, managing support groups, and providing assistance in crisis intervention.

26.1.8 Occupational and Physical

Therapists

Many children who are deaf or hard of hearing, especially in the preschool years, need the services of physical or occupational

therapists. Services include strengthening ﬁne and gross muscle

development as well as vestibular development and sensory integration.3 These services may be provided in schools or may be obtained from clinicians outside of school. If the clinicians providing these services are not familiar with hearing loss, the audiologist or another member of the team familiar with hearing loss should work with the clinicians to help them understand about hearing loss and about how they can work to improve the child’s listening skills during their therapy sessions.

Pearl

Paper or electronic notebooks are eective only if everyone,

including parents, is committed to both writing a summary of contact with the child and reading other clinicians’ entries.

Fig. 26.2 is an example of another communication tool that can be useful. It is an information sheet that can be shared between the audiologist and SLP. Because the SLP or auditory verbal therapist sees the child frequently, she is in a good position to identify the

child’s auditory problems speciﬁcally. Ideally, the SLP/LSLS should

attend the audiology appointments. If that is not possible, sharing information with the audiologist in a clear and concise way places the audiologist in a good position to make changes in equipment to improve listening skills.

_____Cochlear Corp. _____Advanced Bionics _____MED-EL

26.1.9 Professionals in the Community

When children receive services from clinicians in more than one center or from individual providers, everyone on the team must make a commitment to open communication. A child may receive speech-language services from a provider at one center and audiology services from a provider at another. The audiologist can deliver the best possible audiology services only when she knows how the child is performing with HAs at home and at school. For example, the SLP, auditory therapist, and classroom

teacher should be able to tell the audiologist what speciﬁc

phonemes the child is not hearing or that the child is having

diculty hearing soft speech. With speciﬁc information, the

audiologist can adjust technology to improve the child’s brain access to auditory information.

A system of communication, shared among clinicians, needs to be formulated that will provide ongoing information about how a child is performing. Certainly, everyone working with a child should send diagnostic and evaluation reports to others on the team. However, evaluations usually do not occur frequently, so any problems that develop between evaluations may not be reported to all team members in a timely fashion.

Some families have found a communication notebook to be a useful tool for sharing information among team members. The notebook travels with the child to every setting and team member. Then, everyone who works with the child writes down what is happening during each contact, including concerns about performance, homework, and questions for others on the team. Some families have developed a website or blog where everyone involved with the child can share information.

Fig. 26.2 Communication between the speech-language-auditory therapist and audiologist: observation of auditory perception.

26.2 The Case Manager

For team coordination to work well, someone must be designated to be the case manager. There must be a go-to person, or critical problems may remain unsolved.

282

26 Collaborative Team Management of Children with Hearing Loss

26.2.1 How Is It Decided Who the Case

Manager Will Be?

Determining the case manager is critical, especially when children are seen for services in multiple facilities. In some cases,

each clinician operates in a “silo,” without really communicating

well with others involved with the child.

Pitfall

A silo model of s ervice deliver y cannot be in a child’s best interest.

Identifying a case manager can be a tricky proposition. The following issues ought to be evaluated:

How is the case manager actually determined?

•

Is there even a case manager?

•

Is there thoughtful discussion between team members about

•

the child’s needs at this point in time, and who is best suited

to manage them?

Is the case manager the practitioner who sees the child most

•

often?

Does the case management decision happen by default?

•

Who has input into selecting the manager?

•

What is the role of the parent in selecting the manager?

•

Do all team members recognize who is the case manager?

•

Because the case manager must assume a critical leadership role, these questions should be thoughtfully answered in order for

the team to work together eectively to attain the family’s desired

outcome. See Table 26.3 for a list of the responsibilities of the case manager.

If a child is receiving services from many facilities, the parents will often be responsible for coordinating services. Although the

parents are ultimately responsible for their child, it can be dicult for them to negotiate dierences of opinion between clinicians.

Therefore, it is often useful if one of the clinicians involved in the case acts as the coordinator. As the child’s needs change over time, the coordinator may change.

When audiologic issues are paramount, such as when a child is initially diagnosed or when hearing loss is uctuating, the audiologist usually assumes the case manager role. On the other hand,

when pa cially in preschool years, the SLP or auditory therapist is usually the c planning, a TOD typically becomes the case manager. When there are complex otologic medical issues, the otologist will be the case manager.

tients are receiving ongoing habilitation services, espe-

ase manager. When a child requires integrated educational

26.2.2 Team Meetings

The optimal way for all players to communicate is to have periodic interdisciplinary team meetings. If many children are seen

by the same group of clinicians in one location, or in dierent locations, it will be beneﬁcial for the team members to meet

monthly or bimonthly to discuss all children as needed. However,

if clinicians from dierent facilities are involved in providing services, it can be dicult for them to meet in one room at the

same time. A conference call using telephone or Skype may be

useful for discussing speciﬁc issues as they arise and in planning

for joint recommendations. For children who are in school, the

annual Individualized Education Program (IEP), or 504, meeting

is frequently a good time to have a team meeting. Clinicians from the community center can go to the school or can participate by phone or Skype. When there are multiple clinicians from one facility, they can meet to discuss the case and have one represen-

tative participate at the IEP/504 meeting.

26.2.3 Dealing with Disagreements among Team Members

The child and family will beneﬁt most from receiving a consistent message from all clinicians about goals for the child and ways of achieving the goals. If, for example, one clinician works with the child using American Sign Language (ASL) and another uses auditory-based therapy, the child is not receiving consistent intervention. Moreover, the family is put under a great deal of stress as they attempt to determine what is best for their child

while managing very divergent treatments that have dierent

desired outcomes.

Clinicians may have legitimate disagreements about recommendations for the child, and families are entitled to know everyone’s opinion. However, clinicians should try to work out

dierences with each other before discussing recommendations

with families.

Table 26.3 Responsibilities of the case manager

1. Collecting information from everyone working with the child

2. Distributing information to all team members

3. Determining the services that are needed

4. Addressing problems as they arise

5. Ensuring that the child actually is receiving all the necessary services

6. Being available to provide support to the family

7. Communicating with all clinicians either at case conferences or by phone, mail, or email

283

IV Educational and Clinical Management of Hearing Loss in Children

Pitfall

Disagreements among clinicians need to be handled in a way that does not involve families in interprofessional disputes.

When there is a serious disagreement, such as whether a child should receive a cochlear implant or whether one educational placement is better than another for a child, parents should be advised of the dierent opinions, should be presented with complete and objective information, and should be given assistance in

ing their decision. Clinicians are experts in their own areas;

mak

however, the family is always the ﬁnal arbiter about what is best

for their child. Professionals must behave professionally and respectfully toward parents and other professionals, regardless of the decisions made by the family.

26.3 Case Examples and Discussion

of Case Management Issues

26.3.1 Case 1

“Vic” (not his real name) is a preschooler who is ready to transition to his local school district. Vic has a severe hearing loss that

was identiﬁed at 12 months of age; he was ﬁtted with HAs and an

RM system at that time. He received in-home early intervention that included services provided by an SLP and a TOD. The SLP was the initial case manager.

Before Vic reached 2 years of age, the audiologist, SLP, and TOD met to discuss the case. It was determined that Vic was not receiv-

ing sucient beneﬁt from his HAs. When wearing his HAs, he was detecting sounds in the moderate hearing loss range, an insucient

loudness to provide brain access to the speech spectrum at average and soft conversational levels. Everyone working with Vic recognized that he could function well only when it was quiet or when he was listening through the RM system. He was not able to hear well at a distance or when there was competing noise. A CI was recommended, and Vic received the implant at 2 years of age. Three months later, he started wearing an HA on the unimplanted ear.

At age 3, Vic entered a listening and spoken language preschool program at a school for the deaf. In addition, he attended a mainstream preschool two afternoons per week. The TOD from the school for the deaf became the case manager and coordinated services between the center, the school for the deaf program, and the mainstream preschool. Even though Vic was doing very well with his CI, he continued to detect sound at only moderate hearing loss levels with the HA worn in his unimplanted ear and

was having diculty hearing in noisy situations. So, at 4 years of

age, he received a second CI. Testing with two CIs indicated that Vic could now detect sound at borderline normal hearing levels. Word recognition scores, obtained during an audiologic evaluation using the Northwestern University Children’s Hearing in Pictures (NU-CHIPS) test,11 were 84% at a normal conversational level of

loudness (50 dB hearing level [HL]), and 60% at a soft conversational level (35 dB HL). In his speech-language-listening evaluation, Vic obtained listening scores of 80 to 100% on the Lexical Neighborhood

Test (LNT) and Common Phrases test.

an age equivalent of 5.5 years on the Peabody Picture Vocabulary

Test (PPVT)-III,13 and he was in the 75th percentile on the Clinical Evaluation of Language Fundamentals—Preschool (CELF-P).

The team, consisting of the audiologist and TOD consultant from the school for the deaf, the speech-language-listening therapist, and the teachers from both the mainstream preschool and the preschool deaf infant program, met again and determined that Vic was ready to be transitioned back to his local school district. The TOD attended the IEP team meeting at the school district and discussed the services that Vic would require to be successfully mainstreamed.

When Vic started school, the TOD visited the mainstream class

and met with the sta to provide training about hearing loss,

auditory brain development, and ways to maximize Vic’s auditory performance. The TOD from the Hearing and Speech Center

remained in touch with both the school and clinic stas to make

sure that Vic continued to perform well in school.

Language testing indicated

26.3.2 Case 2

“Gail” (not her real name) is an example of a child with auditory neuropathy spectrum disorder (ANSD). Gail passed otoacoustic

emissions (OAE) screening at birth, but as time went on, she demonstrated delayed speech and language development. The parents reported their concern to the pediatrician on several

occasions, and ﬁnally, at age 18 months, Gail was referred for an audiologic evaluation. At that time, she was identiﬁed with

a moderate, bilateral sensorineural hearing loss (SNHL). At 19 months, a click auditory brainstem response (ABR) suggested a moderate, bilateral hearing loss. However, ABR testing at that time did not include tonal air and bone thresholds and did not test reversed polarity to check for ANSD, so those results were questionable and could have resulted from the confusion of the cochlear microphonic with an ABR (Chapter 33).

Although Gail wore her HAs consistently, participated in a good

preschool therapy program, and had parents who worked consistently with her, she was not making good progress. Her speech and language skills were slow to develop, and she was not able to use hearing to understand speech. The school suggested that the

family consider moving Gail to a program using ASL because of her lack of progress developing auditory skills. At 2.5 years of age, the

family sought a second opinion about her diagnosis. The audiolo-

gist at the second opinion center was concerned about Gail’s performance and poor auditory skills. With her hearing aids, Gail was

detecting sound at borderline normal levels, and she was involved in a good auditory therapy program, but she was not making the expected progress. Consequently, testing was repeated including ABR with reversed click polarity, OAE testing, and tympanometry

with acoustic reexes. This time, testing suggested ANSD.

Gail’s case was reviewed at a team meeting. The audiologist became the case manager. Bilateral CIs were recommended. Gail received the implants at 38 months of age. She remained in the

auditory-oral (listening and spoken language) preschool and

made excellent progress. At the 6-month CI evaluation, word

recognition tests indicated the NU-CHIPS test11 scores of 93% at

50 dB HL, 87% at 35 dB HL, and 80% at 50 dB HL +5 dB SNR. Speech and language evaluation at 4.5 years of age indicated delayed

284

26 Collaborative Team Management of Children with Hearing Loss

language (PPVT) with performance at a 3-year, 7-month age level. Expressive language scores were at 3.7 years. Speech production was excellent at 5.5 years.

Gail’s case management then shifted from the audiologist to

the TOD as education issues became paramount. The team met

again and decided to return Gail to her local school district in an

integrated kindergarten class because her language scores were

not sucient for her to be in a mainstream class. Services now

included speech-language-auditory services and TOD services,

each delivered ﬁve times weekly. A personal RM system was

recommended for school use. The TOD from the Hearing and

Speech Center met with the school to conﬁrm that Gail was going

to receive all necessary services. She visited the school, observed

the class, and met with the sta to provide training about hearing loss and ways to maximize Gail’s auditory performance. The TOD took over monitoring Gail’s performance and providing preview

and review of academic materials.

26.3.3 Case 3

“Suzy” (not her real name) is an example of shifting case management over time. Suzy is a college student who had profound

hearing loss identiﬁed as a toddler. As a toddler, Suzy was ﬁtted

with HAs and an RM system; however, her HAs enabled her to detect sound only at moderate hearing loss levels. Early psychological testing indicated normal intelligence, and Suzy was enrolled in an auditory-verbal therapy program. The LSLS was

the ﬁrst case manager.

Suzy did not make the progress that was expected. She was clearly intelligent but could not seem to learn auditorily, and her speech and language skills were delayed. Because Suzy was not

making sucient progress, when the team met, they felt that they

could not recommend a mainstream kindergarten placement. The team discussed Suzy’s lack of progress with the family and recommended an alternate therapy program, such as cued speech or ASL. Because the family was anxious to attempt mainstreaming Suzy, they decided to try cued speech. Consequently, Suzy entered kindergarten with a cued speech interpreter. The school SLP became the next case manager.

Suzy continued to receive speech-language-auditory therapy. With the use of the cued speech interpreter, Suzy was able to improve her speech and language skills, but her auditory skills remained poor.

At 7 years of age, the family decided to consider a CI. Following

implantation, Suzy’s auditory skills improved dramatically. Within a year, Suzy felt that she no longer required the cued speech interpreter. Her mother and the other clinicians involved in Suzy’s management were skeptical about Suzy’s attending school without an interpreter. As a result, the interpreter remained in the

class for another 6 months; however, she provided less and less

assistance. Finally, everyone was comfortable having Suzy in the classroom without that support.

Responsibility for case management remained with the speech-language-auditory therapist, who continued to provide services. By fourth grade, Suzy began using a note-taker, and when she entered high school, she stopped receiving speech-language services.

Suzy’s mother now became the case manager. Suzy received Communication Access Real-time Translation (CART) services in high school for academic subjects. At the time, she entered high school and decided to receive a CI for her second ear. Suzy then returned to auditory therapy for 1 year after receiving the second CI. She is now a freshman in college, majoring in psychology. She receives CART services in the classroom and extended time for tests. Her grades are good. She is now her own case manager.

26.3.4 Case 4

“Lenny” (not his real name) has Down syndrome. Lenny’s auditory management began when he was 5 months old. Lenny

failed his newborn hearing screening. Follow-up behavioral and ABR testing indicated moderate hearing loss by air conduction, but bone conduction thresholds were within normal limits. He

had at tympanograms, consistent with middle ear pathology.

Lenny was referred to an ear, nose, and throat specialist. Otologic evaluations revealed very narrow external auditory canals and bilateral serous otitis media.

Management issues were discussed. Should Lenny receive myringotomy tubes? Should he receive HAs? In either case, he needed speech-language-auditory therapy. Management became the responsibility of the otologist because medical issues were paramount. After discussion with all team members, the otologist decided not to use myringotomy tubes because of the narrowness of the ear canals. In addition, since it was now spring, it was hoped that Lenny’s health would improve and his middle ears would

clear of uid.

Subsequently, Lenny was ﬁtted with ampliﬁcation and was doing well, even though uid was still present in his middle

ears. He was closely monitored otologically and received several courses of antibiotics. Middle ear disease cleared up for short periods of time but returned, with associated hearing loss that

negatively aected his speech and language development.

Responsibility for case management moved to the audiologist to deal with ampliﬁcation issues. Lenny received speech- language-auditory therapy and was enrolled in a special education preschool. At 3 years of age, hearing testing continued to indicate a primarily mild hearing loss with moderate thresholds in the low frequencies. Unaided word recognition testing using a test appropriate for Lenny’s receptive language level indicated

poor word recognition scores (48%) at a normal conversational level (50 dB HL), 0% at soft conversational levels (35 dB HL), and very poor word recognition (24%) at a normal conversational level

with competing noise added. Fortunately, testing with HAs and an

RM system revealed excellent word recognition scores (86 to 94%)

in all three conditions.

The case was discussed again with the team. The otologist felt

that the situation in Lenny’s ears had changed suciently so that

myringotomy tubes now could be inserted. Surgery was performed and hearing improved slightly, but HAs were still necessary.

Case management then moved to the speech-languageauditory therapist, who was now the primary provider. When Lenny entered kindergarten in a special education class, management was shared between the classroom teacher and the speech-language-auditory therapist, who continued to provide services to Lenny.

285

IV Educational and Clinical Management of Hearing Loss in Children

26.4 Conclusion

Although providing collaborative services requires increased

eort on the part of all involved, the extra work is more than worth the eort because collaboration is essential for the

provision of quality services to infants and children. In some ways, teaming makes the jobs of all professionals easier because collaboration enables each to work in designated areas of expertise and allows other team members to contribute their unique knowledge. Each team member values his place on the team and respects and appreciates the roles of the others. Furthermore, having multiple clinicians provides more support to families.

The case manager typically changes over time, and eventually the family usually takes over that responsibility.15 When children reach college age, many are capable of taking over responsibility for their own services. Self-advocacy is, of course, the ultimate goal.

Discussion Questions

1. What factors should be considered when determining which

professional should be the team manager for a child with hearing loss at any point in time?

2. How are members of the team selected?

3. What are some ways that team disagreements might be

resolved?

4. What strategies and techniques will allow all team members to stay in communication with one another?

References

[1] Madell JR, Homan RA, Kooper R, Seth S, Heymann L, Rothschild P, et al. Coordi-

nation of cochlear implant services. Audiol Today 2003;Focus Topic:FT1–FT20

[2] Yoshinaga-Itano C. Achieving optimal outcomes from EHDI. ASHA Lead

2011;16(11):14–17

[3] MacIver-Lux K, Estabrooks W, Lim SR, et al. Professional partnerships and

auditory-verbal therapy. In: Estabrooks W, MacIver-Lux K, Rhoades EA, eds. Auditory-Verbal Therapy for Young Children with Hearing Loss and Their Fam-

ilies and the Practitioners Who Guide Them. San Diego: Plural Publishing, Inc.; 2016:507–543

[4] McNamara T, Richard G. Better together. ASHA Lead 2012;17(3):12–14 [5] Boons T, Brokx JP, Dhooge I, et al. Predictors of spoken language development

following pediatric cochlear implantation. Ear Hear 2012;33(5):617–639

[6] Cole E, Flexer C. Children with Hearing Loss: Developing Listening and Talking,

Birth to Six. 3rd ed. San Diego, CA: Plural; 2016

[7] Hall JW III. Introduction to Audiology Today. New York: Pearson; 2014 [8] Madell JR. Acoustic accessibility: the role of the clinical audiologist. In: Smaldino

J, Flexer C, eds. Handbook of Acoustic Accessibility: Best Practices for Listening,

Learning, and Literacy in the Classroom. New York, NY: Thieme; 2012:128–142

[9] Medical Home Initiatives for Children With Special Needs Project Advisory

Committee. American Academy of Pediatrics. The medical home. Pediatrics 2002;110(1 Pt 1):184–186 .

[10] Robertson L. Literacy and Deafness: Listening and Spoken Language. 2nd ed. San

Diego, CA: Plural; 2014

[11] Elliot L, Katz D. Development of a New Children’s Test of Speech Discrimination.

St Louis, MO: Auditec; 1980

[12] Osberger MJ, Miyamoto RT, Zimmerman-Phillips S, et al. Independent evaluation

of the speech perception abilities of children with the Nucleus 22-channel cochlear implant system. Ear Hear 1991;12(4, Suppl):66S–80S

[13] Dunn LM, Dunn LM. Peabody Picture Vocabulary Test. 4th ed. (PPVT-4 Scale).

New York, NY: Pearson Assessments; 2007

[14] Wigg E, Secord W, Semel E. Clinical Evaluation of Language Fundamentals—Pre-

school (CELF-P). New York, NY: The Psychological Corporation; 1992

[15] Madell JR, Flexer C. Who is in charge? Case management of children with hearing

loss. AudiologyOnline, Recorded Course #21112. http://www.audiologyonline.

com/audiology-ceus/course/early-intervention-aural-habilitation-children-

who-in-charge-case-management-21112. 2012. Accessed January 1, 2018

286

27 Communication Approaches for Managing Hearing Loss in Infants and Children

27 Communication Approaches for Managing Hearing Loss in

Infants and Children

Carol Flexer, Jane R. Madell, Jace Wolfe, and Erin C. Schafer

Summary

This chapter discusses the practical implications of communication approach decisions available to and made by families.

Speciﬁcally, factors to consider for auditory, visual, and combined

approaches are detailed. The tables in this chapter present summary information about each communication approach in a very accessible and user-friendly fashion. The chapter emphasizes that every communication approach decision should be reviewed regularly. Not every program is right for every child, and families may change approaches over time as the child grows and learns.

Keywords

communication, language, talking, signing, family, hearing, hearing loss, deaf, hard of hearing, infants, children, neuroplasticity, auditory brain, outcomes, audiology

Key Points

The main communication approaches rst discussed with

•

families typically include: those that focus on listening and spoken language, including auditory-verbal therapy and auditory-oral (now called auditory-verbal) education; cued speech; total communication; American Sign Language; and Bilingual-Bicultural. Families need to be provided with full information about each

•

approach; an important way to begin the communication options conversation is to ask families about their desired outcome for their baby/child. The professional must recognize that ~ 95% of children with

•

hearing loss are born to hearing and speaking families. These families are often interested in having their child learn to listen and talk, and most do not know sign language. Some communication approaches are primarily auditory in

•

orientation, and some are primarily visual. There are critical family, technological, and intervention

•

factors that must be in place for any approach to reach the family’s desired outcome. Families need to understand what is required to have each approach succeed.

27.1 What Are the Communication Approaches?

Various communication approaches are available for managing hearing loss in infants and children.1 The decision about selecting the best approach for a particular child and her family usually is overwhelming because parents are asked to make this important decision at a time when they have just learned they

have a baby or child who is deaf or hard of hearing and when they have had little or no experience with hearing loss, hearing aids, or cochlear implants.

Pearl

A decision about how to communicate with one’s child is really a decision about how to teach that child—about how to live life.

The purpose of this chapter is to present a summary of the var-

ious communication approaches and to provide a list of resources

websites that oer additional and detailed information about

and

each approach.

A variety of approaches are available for teaching babies and children who are deaf or hard of hearing to communicate. Some approaches are primarily auditory, and some are primarily visual;

these dierent orientations likely will lead to dierent outcomes.

27.1.1 Factors to Consider

A family might consider many of the following factors when choosing how to te ach and communicate wit h their child:

What is the family’s desired outcome for their child?

•

What language(s) does the family know? (Research in child

•

development encourages the family to speak their home

language to their babies/children; parents are the child’s ﬁrst

teacher.10)

Is the family ready to take on the commitment that the com-

•

munication approach requires?

Is the communication approach in the best interest of this

•

particular child and family?

Does the communication approach enable the child to have

•

control and inuence over the environment, to converse about

needs, and to take part in nuanced and layered conversations

about abstract ideas?

Does the communication approach enable all family members to

•

communicate deeply—not only on the surface—with the child?

Does the communication approach permit the child to feel

•

part of the family unit through pleasurable and signiﬁcant

interaction?

How will the child communicate with peers, with extended

•

family, and with the community as a whole?

Will the child be equipped by school age with the necessary

•

language, thinking, and learning skills?

2,3,4,5,6,7,8,9

287

IV Educational and Clinical Management of Hearing Loss in Children

27.1.2 Auditory Approaches

We hear with the brain. The ear is the “doorway to the brain”

for sound/auditory information. brain—the eye is the doorway to the brain for visual information. Hearing loss, then, is a doorway problem. Hearing loss obstructs that doorway in various ways and to varying degrees, preventing auditory input from reaching the brain. Hearing devices break through the doorway to allow activation, stimulation, and development of auditory neural pathways with auditory information, including spoken language. The purpose of hearing technology is to get auditory information through the doorway to the brain. There is no other purpose.

An auditory approach, therefore, is based on the assumption that the brain of a baby or child with hearing loss can have primary access to auditory information through the use of appro-

priately

cochlear implants (CIs). to develop spoken language and communication through listening (auditory brain development), leading to full and independent integration of the child into the general hearing community.

to as auditory-oral (A-O) and auditory-verbal therapy (AVT).

Recently, a certiﬁcation program has been developed called the

LSLS (Listening and Spoken Language Specialist) that recognizes the unity and similarities in both listening and spoken-language approaches. There are two branches of the LSLS program: LSLS Cert. AVEd (Auditory-Verbal Educator) and LSLS Cert. AVT (Auditory-Verbal Therapist); both branches are focused on achieving the family’s choice of a listening and spoken language outcome for their child. For more information about the LSLS pro-

gram, please refer to AG Bell Academy for Listening and Spoken

Language.

ﬁtted hearing aids (HAs), osseointegrated implants, or

3,5,6,12,13

Historically, the main auditory approaches have been referred

3,11

Similarly, we see with the

The goal of an auditory approach is

3,12,14

Cued speech may be placed in the spoken-language category, because even though it uses a visual system of hand shapes and signals that the family must learn so as to distinguish speech sounds that look the same through lip reading, the goal of cued speech is to facilitate mainstreaming and spoken communication, not to develop a sign language system.

27.1.3 Visual Approaches

Visual approaches, on the other hand, focus on looking, not on listening. They are based on the assumption that a baby or child who experiences hearing loss cannot access her auditory envi-

ronment in a predominant way and cannot become proﬁcient in spoken communication, even with ampliﬁcation.

many visual approaches is to use sign language as the primary communication and to be part of the deaf community.18 Families

who use this approach must become proﬁcient in sign language

or already use sign language as their primary mode of communication, in order to teach their baby/child sign language and to communicate with their children beyond the preschool level.

16,17

The goal of

Pearl

If sign language is the family’s desired outcome, the child must have early and consistent access to a complex sign language

system. The family must be uent in sign language, and the

baby/child must have immediate and consistent exposure to sign language at home and at school. The child’s communication opportunities likely will be restricted to others who use sign language.

Pearls

If listening and spoken communication are the family’s desired outcomes for their baby, the following must be in place:

Early identication and intervention to alleviate auditory

•

neural deprivation and to take advantage of neuroplasticity and developmental synchrony (see Chapter 1 for more information about neural deprivation, auditory brain development, and neural plasticity) Vigilant, ongoing, and family-focused audiologic management

•

Immediate and consistent auditory brain access to sound/

•

auditory information via technology to activate and develop auditory neural capacity

Guidance from a professional who is highly qualied in the

•

development of listening and spoken language (LSL) through techniques of parent coaching Daily and ongoing formal and informal auditory, language,

•

cognitive, and literacy enrichment Integration of auditory strategies into everyday family interac-

•

tions with the child to “grow the baby’s brain”

Examples of visual approaches are Bilingual-Bicultural (BiBi), American Sign Language (ASL), Manually Coded English (MCE), and Conceptually Accurate Signed English (CASE). (See Table 27.1).

27.1.4 BiModal Approach

Some approaches at tempt to teach both spoken and sign l anguage communication. Sign-Supported Speech and Language, and Total Communication (TC). The terms simultaneous communication and total communi- cation often are used interchangeably.

Fitzpatrick et al4 conducted a systematic review of studies investigating the use of sign language and spoken language for children with hearing loss. They found that limited, and hence

insucient, high-quality evidence exists to determine whether sign language in combination with oral language is more eective

than oral language therapy alone. However, other studies suggest that better spoken language outcomes are obtained when spoken language/audition is emphasized for children who have appropriate technology and live with family members who primarily use spoken language.

8,19

Examples are Simultaneous Communication,

5,12,20,21

These studies suggest that sign language

288

27 Communication Approaches for Managing Hearing Loss in Infants and Children

fails to enhance spoken language outcomes and may actually hamper outcomes compared to a LSL approach. More research is needed to supplement the evidence base.

27.1.5 Approach Issues

There are advantages and disadvantages to each approach depending in part on:

1. The language(s) the family knows and can teach their child

2. How the family wants to communicate with and raise their child

3. The nature and needs of the child and family

4. The ability of the family to do what it takes to implement a par-

ticular approach

5. The presence of qualiﬁed providers to work with and support

the family

Pearl

Success can be dened as reaching the desired outcome

expressed by the family through the implementation of their chosen communication approach.

Not every child will do well in every approach, for many reasons. Families may select one approach, combine approaches, or change their mind as they acquire more information and experience. selection of a particular communication approach at any point in

the habilitative process is inuenced by many variables, including:

The child’s age at the time of diagnosis of hearing loss

•

The status of the child’s auditory brain development

•

The access and use of technology, and technology management

•

The family’s ability to help instruct the child over time

•

Other problems, disabilities, or challenges not related to

•

hearing loss that the child may have or that may surface as

the child ages

The quality of intervention programs that are available for

•

infants and school-aged children in the family’s geographic

area

If a child’s hearing loss is not identiﬁed in infancy, or if the child

does not have working technology in the early years, it will be very

dicult for the child to receive sucient auditory brain exposure

for the development of listening and spoken language skills.

If a child has multiple disabilities, it may be dicult to develop

spoken language, but the child may be able to develop good listening skills. If a child has motor limitations, sign language use may

dicult. If a family has chosen sign language to communicate

with and to teach their child, but the family is not uent in sign

language, the child will have limited language exposure. Children with multiple disabilities will most likely have a reduced language outcome because of their disability, regardless of the communication mode that the family chooses. However, as long as the child has a cochlear nerve and has brain access to intelligible

speech through appropriately ﬁtted hearing technology, language

The

outcomes will be optimized if the family’s native communication mode is selected.

27.1.6 Summary of Approaches

Many Web sites and books explain each approach in detail; some of these resources are included at the end of this chapter. Table

27.1 and Ta ble 27. 2 summarize these approaches. Families need to be provided with full information about each

approach, including advantages and disadvantages. to begin the communication options conversation is to ask the family about their desired outcome for their baby or child. That is, how do they want their child to communicate in the family constellation, in school, and in the community? The professional

must recognize that ~ 95% of children with hearing loss are born to

hearing and speaking families that do not have any sign language

17,19

skills. learn to listen and talk. The conversation then needs to focus on

what it takes from both the family and a qualiﬁed interventionist

to implement each approach, because every approach requires family involvement.

tion program such as a collaboration with an LSLS along with a mainstream preschool or, in contrast, enrollment in a signing

program) are very dicult and can be made only after a great deal

of thought.

they are advised to do the following:

•

These families are often interested in having their child

Programming decisions (e.g., selection of an early interven-

Before a family makes a communication approach decision,

Visit the various programs and individual therapists in the community

Meet and speak with parents of other children with hearing

loss, as well as their children, who are enrolled in dierent

programs Meet and speak with older teens and adults with hearing loss

who have been taught using the various approaches, keeping in mind that they may have been born at a time that did not have access to newborn hearing screening, early intervention, CIs, or digital HAs

22,23,24

One way

27.2 Conclusion

Every communication approach decision should be reviewed regularly. Not every program is right for every child, and families may change approaches over time. As the child grows and learns, the family and therapists will discover more about what is best for the child.

Pearl

A key issue is expectations. In this time of early identication and

advanced technologies, parents and family ought to have high expectations for outcomes, if all parties do what it takes.

289

IV Educational and Clinical Management of Hearing Loss in Children

Table 27.1 Visual languages, systems, and strategies

Communication approach Characteristics of communication

ASL ASL is a visual-gestural language that is used by some deaf people in the United States and Canada. It has its own set of

CASE or PSE Signs from ASL are used in English word order. The focus is on conceptual accuracy to augment understanding, and

MCE These systems, including Seeing Essential English (SEE1) and Signing Exact English (SEE2), were constructed by educators

Abbreviations: ASL, American Sign Language; CASE, Conceptually Accurate Signed English; MCE, Manually Coded English; PSE, Pidgin Signed English. Note: Teachers or interpreters with special skills in each of these visual modes will be required to implement the communication approach. In addition, family

members will need to become procient in these visual approaches to teach their children and to communicate with their children beyond a preschool level.

Table 27.2 Summary of communication approaches and philosophies, from most auditory to most visual

Communication approaches and philosophies

AVT approach (AVT has also been called “unisensory” and “acoupedic”)

A-O approach (now called AVEd by many professionals)

Cued Speech A supplement to spoken English, Cued Speech is intended to make important features of spoken language fully visible because

Sign-Supported Speech

TC Introduced in the 1960s, the Total Communication philosophy aims to make use of several strategies or modes of

Simultaneous Communication

BiBi A person who achieves uency in ASL and English (or another language) is bimodal. Using this approach, ASL is often taught as

Abbreviations: AVEd, Auditory-Verbal Education; A-O, Auditory-Oral; ASL, American Sign Language; AVT, Auditory-Verbal Therapy; BiBi, Bilingual-Bimodal; CI, cochlear implant; HA, hearing aid; TC, Total Communication

Note: Developed with Arlene Stredler Brown; see Chapter 28 for more information about early intervention practices.

language rules that are separate from spoken or written English. It is not possible to speak English and sign ASL at the

same time. Speech is not used, and the goal is to communicate using sign language, not spoken language. Dierent sign language systems are used in dierent countries.

no attempt is made to provide a one-to-one relationship with spoken English. Specic features of ASL, such as facial

expression and use of space, may be used. Both CASE and PSE rely on context and mechanisms such as initialization to support meaning.

to teach English. The sign systems attempt to represent English by combining ASL signs, English word order, and some invented signs to represent grammatical markers (plurals, possessives, tenses) in English. Each word, including each morpheme, is signed. An example would be to sign the word “working” by signing the word “work” and then signing the ending “ing.” All structure words, such as “the” and “to,” are signed in this system.

Denition

This is primarily an early intervention therapeutic approach in which technology (HAs or CIs) is paired with specic techniques and

strategies that teach children to listen and understand spoken language. The 10 Principles of Auditory-Verbal Practice focus on parent coaching to foster cognition, speaking, reading, and learning through auditory brain development. Visual cues (lip reading and sign language) are not used or taught during therapy, so that the child can develop the auditory brain through directed listening practice. However, it is understood that children may use visual cues in general conversation. The foremost goals of A-V therapy are to guide parents and caregivers as the primary facilitators for helping their children develop intelligible spoken language through listening and to advocate for their children’s inclusion in regular schools. AVT uses one-on-one teaching of parent or caregiver and child, focusing on strong family involvement; children are mainstreamed from the beginning. some children will require additional auditory support after entering the mainstream. Parents are key partners in AVT.

This approach has spoken language as a desired outcome. Active listening, enhanced by the use of HAs or CIs, is accompanied by speech reading to receive instructional and conversational information. The use of natural gestures is acceptable; sign language is not used. Children with hearing loss may be grouped together in auditory-oral (also called listening and spoken language [LSL]) classrooms for specialized oral instruction, at least in preschool and kindergarten, with mainstreaming being a goal. Family members will need to learn how to manage auditory technology and how to provide an enriched spoken language environment for their child.

~ 60% of the phonemes are not visible through speech reading. The goal of Cued Speech is the reception and expression of spoken communication. This system enhances speech reading by employing phonemically based gestures to distinguish between

similar visual speech patterns, such as demonstrating the dierence between /b/, /p/, and /m/ (recognition of voicing or nasality) by using a specic hand signal. Family members will need to learn Cued Speech to teach their child and to communicate with

their child, but learning Cued Speech is easier than learning sign language because it makes use of standard English word order, and the number of signs needed is limited. Children are expected to be able to drop the use of cues once their oral language skills

are rmly established.

Signs are used occasionally to support spoken language development. Signs function as a bridge and language to enhance the meaning of oral communication. The signs also can serve to enhance understanding in certain challenging situations, such as noisy environments or when a hearing device is not in use. Family members will need to learn sign language in addition to oral communication techniques to teach their child and to communicate with their child.

communication, including sign, speech, auditory, written, and other visual aids. First developed by Roy Holcomb, TC uses a choice of modalities depending on the particular needs and abilities of the child and professes to provide whatever is needed to foster communicative success. Children will need to be placed in a TC classroom or have an interpreter if in general education classrooms. Family members also will need to learn sign language and other prescribed techniques to teach their child and to communicate with their child.

This is the concurrent use of signs and speech. To provide language using two modalities simultaneously, a sign system, rather than a signed language, is used. This visual representation of the oral language is accomplished using manual symbols and signs. If not in a self-contained classroom that uses sign language, the child will require a sign language interpreter. Family members will need to learn both sign language and oral communication techniques to teach their child and to communicate with their child.

the rst language and English is taught as a second language to develop literacy skills. English may be taught by using a sign

system or through print—spoken English is not featured. The child will need to be in an ASL self-contained classroom or will require an ASL interpreter if placed in a general education classroom. Family members will also need to learn ASL and the Englishbased sign system to teach their child and to communicate with their child.

However,

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