For Children with Hearing Loss, Parents’ Desired Outcomes Should Drive Early Intervention & Use of Hearing Technology

2009_01_20_2374

Photo by bjorn knetsch

Just this past week, a hallway conversation with a colleague underscored the frustration that parents and caregivers of children with hearing loss seem to encounter on an all-too-frequent basis. My colleague described a situation whereby some very diligent parents had chosen to pursue bilateral cochlear implantation for their 10-month old son with a profound bilateral sensorineural hearing loss. Even though they had gathered a mountain of information, received support from their pediatrician, approval from their insurance company, and spoke to countless other parents – some of whom had chosen cochlear implants for their children with hearing loss and others who had not – they found the most resistance from their early intervention providers. Not only were these professionals unsupportive, they provided grossly inaccurate information about cochlear implants and listening and spoken language outcomes. It was plainly obvious to these parents that they had obtained more knowledge than the “professionals” who were there to serve them. Unfortunately, this scenario is repeated too often throughout the United States.

Almost without exception, parents want their children to have more successful lives than themselves. Whether that success be academic, social, or career-related, parents want what is best for their children. Determining what is “best” is a complicated process. Parents must use their own familial experiences, cultural perspectives, belief systems, and knowledge to make decisions that will affect the developmental, communicative, and academic success of their children.

For parents of young children with hearing loss, research informs us that approximately 95% of these parents are hearing themselves and have little or no experience with deafness. Usually, their only exposure to deafness is what they’ve seen portrayed in the media or the occasional interaction with an older relative with an age-related hearing loss.

So, what are parents to do and how should they determine what is best for their infant or toddler who has been diagnosed with hearing loss? Once that diagnosis is confirmed, parents need access to information about communication options and expected outcomes, hearing technology, and the available services in the community. The child’s audiologist is a pivotal professional in this process as he or she should get this discussion started. The range of hearing technology, such as digital hearing aids, cochlear implants, and assistive listening devices should be thoroughly reviewed and prescribed. Then, the family should be referred to an early intervention program (usually a statewide system), and appropriate early intervention services should be initiated.

The type, frequency, and intensity of the early intervention services should be based on the parents’ desired outcomes for the child. That is, if the child’s parents have decided that they want their child to be eventually mainstreamed in a local public school with hearing peers and to communicate using spoken language, then early intervention services should be structured to support those desired outcomes. Too often – in too many states – parents are given a very limited menu of services that are available and simply told which services will be provided. Of course, when this occurs, it fails the test of having services that are individualized, and the services certainly are not driven by what the parents want for their child with hearing loss.

Ultimately, parents need to make informed decisions about what they consider is appropriate for their child. They need to gather information from multiple sources, speak to other families who have navigated the system, and make sure they are informed about their rights. Each state has its own unique way of doing things, including how federal laws are interpreted and services provided. With perseverance and due diligence, parents usually can structure services that are appropriate for their child. The key is to be persistent and to not give up until the services provided support those long-term, desired outcomes that are envisioned for the child!

(Note: This blog was adapted from an original posting by the author on the Better Hearing Institute’s Pediatrics Blog.)

 

K. Todd Houston, Ph.D., CCC-SLP, LSLS Cert. AVT, is an Associate Professor in the School of Speech-Language Pathology and Audiology at The University of Akron. His primary areas of research include spoken language acquisition in children with hearing loss, strategies for enhancing parent engagement in the intervention process, Auditory-Verbal Therapy, and telepractice. He directs the Telepractice and eLearning Laboratory (TeLL), an initiative to evaluate clinical practices in the area of distance service delivery in Speech-Language Pathology.

A Lesson Learned From a Preemie

Kaitlyn then and now

This week, my daughter, Kaitlyn, will graduate from high school. As I look at this vibrant 18 year-old young woman, I find myself thinking back to her birth. She was born at just 26 weeks gestation, weighing only 1 lb., 12 oz. A few days later, her weight dropped to 1 lb., 6 oz. The neonatologists were cautious; they spoke in hushed tones and could only muster a guarded prognosis. We didn’t know if she would survive.

Just before delivery, while my wife, Maria, was in preterm labor, we had a parade of physicians and residents who visited her hospital room to check her status. The hospital was affiliated with a medical school, so we became accustomed to a regular flow of medical students who were more than a bit curious about the possibility of delivering an infant so early. Each time two of them came into the hospital room to check on my wife (they seemed to travel in pairs), they would do a quick exam and then reach into their coat pockets to get the “card.” This seemingly magical card contained a set of statistics that detailed the survival rates of infants born at various birth weights and gestational ages. Each physician would then proceed to recite these statistics, which sounded something like this:

“Mrs. Houston, you’re at 26 weeks gestation, and according to our research, infants delivered at this gestational age have a 20% chance of survival. If you deliver at 27 weeks gestation, the survival rate improves slightly to 26.8%. Of course, if you deliver later, the percentage of children who survive continues to increase.”

Like clockwork, each physician and/or medical student would reach for his or her card after every visit to the room. The story was basically the same except for a few additional potential “complications” for a child born at each gestational age – such as blindness, deafness, cerebral palsy, brain bleeds, and a variety of other medical conditions. After witnessing a few of these episodes, my wife and I could recite the statistics from memory!

At the time, repeatedly hearing what could happen to our daughter was difficult to absorb. The information could have been delivered in a more patient-friendly – and parent-friendly – manner. The statistics that were shared were grim, but knowing what could happen helped us to prepare. Those two days in the hospital trying to prevent and then waiting for Kaitlyn’s delivery allowed us to understand the worst possible scenario but, at the same time, hope and pray for the best outcome.

As I reflect on that experience, the statistics that the physicians cited were quite impressive. In fact, I’m a bit envious that we can’t say something similar for children born with hearing loss, which is the population that I work with most frequently. That is, I wish we had the ability to confidently state that: “…an infant identified at birth with a severe to profound bilateral sensorineural hearing loss and fitted with XYZ hearing aids and immediately enrolled in early intervention will have a 96% success rate in developing intelligible spoken language by the time s/he is five years old” or “an infant who fails to develop adequate listening, speech and language outcomes with hearing aids and then gets cochlear implants by one year of age will achieve age-appropriate developmental outcomes within 18 months if the parents are fully engaged in the intervention process and when services are delivered by a qualified provider.”
To accomplish something like this would require enormous resources and standard protocols for professionals across many disciplines, including but not limited to: Pediatric Medicine, Audiology, Speech-Language Pathology, Deaf Education, Special Education, and Early Childhood Education.

The myriad factors one would have to control to obtain similar outcome data for children with hearing loss truly boggles the mind. Some of those factors would include: cause of hearing loss, degree of hearing loss, age of diagnosis, type of hearing technology used, communication approach, type and frequency of early intervention, level of parent engagement in the intervention process, the skills of the service provider, the family’s socio-economic status, and additional medical conditions or disabilities beyond deafness –and that would be just to capture the most basic information.

Parents today who have a child with hearing loss deal with too many challenges to ensure their child is successful. Too often, they face obstacles securing appropriate audiological services and early intervention that supports their preferred mode of communication. Furthermore, the variability in services from community to community is alarming, and if the family lives in a rural area, there’s an even greater chance the child will be grossly underserved or not receive services at all.

Kaitlyn, my 1 lb., 12 oz. baby girl, is leaving high school and will be entering college this summer studying pediatric nursing. Aside from spinal surgery for scoliosis about six years ago, she is a rather typical teenager making the transition into adulthood. We owe her success to treatment and intervention that was well-defined, consistent, and delivered by practitioners who were highly-trained. Someday, I hope all parents who find themselves dealing with a premature infant or some other medical condition at birth – such as hearing loss – can receive the same level of support from the professionals surrounding them.

(Note: This blog was adapted from an original posting by the author on the Better Hearing Institute’s Pediatrics Blog.)

 

K. Todd Houston, Ph.D., CCC-SLP, LSLS Cert. AVT, is an Associate Professor in the School of Speech-Language Pathology and Audiology at The University of Akron. His primary areas of research include spoken language acquisition in children with hearing loss, strategies for enhancing parent engagement in the intervention process, Auditory-Verbal Therapy, and telepractice. He directs the Telepractice and eLearning Laboratory (TeLL), an initiative to evaluate clinical practices in the area of distance service delivery in Speech-Language Pathology.

Auditory-Verbal Therapy: Supporting Listening and Spoken Language in Young Children with Hearing Loss & Their Families

Deep conversation

Photo by juhansonin

Approximately 95% of parents of children with hearing loss are hearing themselves (Mitchell & Karchmer, 2004), and trends indicate that many parents are choosing spoken language as the primary mode of communication for their children with hearing loss. In fact, some states such as North Carolina, are reporting that parents are choosing spoken language options for their children with hearing loss more than 85% of the time (Alberg, Wilson & Roush, 2006), especially when they know spoken language is a viable outcome for their child. And, these parents are typically selecting approaches that support listening and spoken language, such as Auditory-Verbal Therapy, without initiating visual communication systems.

With early identification and the use of advanced hearing technology, children with even the most severe or profound hearing losses can access audition and follow an intervention approach focused on achieving typical developmental milestones in listening, speech, language, cognition, and conversational competence. Parents’ communication choices are based on their long-term desired outcomes for their child. Once those decisions are made, professionals providing early intervention and habilitative services should support the parents’ choices and provide the necessary support and intervention to ensure, to the greatest extent possible, that the child achieves those outcomes.

Definition of Auditory-Verbal Therapy

The Alexander Graham Bell (AG Bell) Academy for Listening and Spoken Language, which is based in Washington, DC, governs the certification of Listening and Spoken Language Specialists (LSLS), the practitioners qualified to provide Auditory-Verbal Therapy. The Academy defines the practice of Auditory-Verbal Therapy as:

“Auditory-Verbal Therapy facilitates optimal acquisition of spoken language through listening by newborns, infants, toddlers, and young children who are deaf or hard of hearing. Auditory-Verbal Therapy promotes early diagnosis, one-on-one therapy, and state-of-the-art audiologic management and technology. Parents and caregivers actively participate in therapy. Through guidance, coaching, and demonstration, parents become the primary facilitators of their child’s spoken language development. Ultimately, parents and caregivers gain confidence that their child can have access to a full range of academic, social, and occupational choices. Auditory-Verbal Therapy must be conducted in adherence to the Principles LSLS of Auditory-Verbal Therapy” (AG Bell Academy, 2012).

The Principles of Auditory-Verbal Therapy: Defining Practice

The Academy has endorsed a set of principles that delineate the practice of Auditory-Verbal Therapy:

  1. Promote early diagnosis of hearing loss in newborns, infants, toddlers, and young children, followed by immediate audiologic management and Auditory-Verbal Therapy;
  2. Recommend immediate assessment and use of appropriate, state-of-the-art hearing technology to obtain maximum benefits of auditory stimulation;
  3. Guide and coach parents to help their child use hearing as the primary sensory modality in developing spoken language;
  4. Guide and coach parents to become the primary facilitators of their child’s listening and spoken language development through active consistent participation in individualized Auditory-Verbal Therapy;
  5. Guide and coach parents to create environments that support listening for the acquisition of spoken language throughout the child’s daily activities;
  6. Guide and coach parents to help their child integrate listening and spoken language into all aspects of the child’s life;
  7. Guide and coach parents to use natural developmental patterns of audition, speech, language, cognition, and communication;
  8. Guide and coach parents to help their child self-monitor spoken language through listening;
  9. Administer ongoing formal and informal diagnostic assessments to develop individualized Auditory-Verbal treatment plans, to monitor progress, and to evaluate the effectiveness of the plans for the child and family; and
  10. Promote education in regular school with peers who have typical hearing and with appropriate services from early childhood onwards.

The Listening and Spoken Language Specialist (LSLS):

Two Paths to Certification

The AG Bell Academy has designated two paths to certification for Auditory-Verbal practitioners: LSLS Certified Auditory-Verbal Therapist (LSLS Cert. AVT) and the LSLS Certified Auditory-Verbal Educator (LSLS Cert. AVEd). The LSLS certification is awarded to qualified professionals who have met rigorous academic, professional, post-graduate education and mentoring requirements, and have passed a certification exam. Typically, LSLS certified practitioners are licensed audiologists, speech-language pathologists, or educators of the deaf who have the required background, training and experience in listening and spoken language theory and practice with children with hearing loss and their families. For additional information about certification as a Listening and Spoken Language Specialist (LSLS), speech-language pathologists and audiologists should contact the AG Bell Academy at academy@agbell.org, visit the website ate www.agbellacademy.org, or call (202) 204-4700.

References

Alberg, J., Wilson, K., & Roush, J. (2006). Statewide collaboration in the delivery of EHDI services. The Volta Review, 106, 3, 259-274.

AG Bell Academy for Listening and Spoken Language (2012). 2012 certification handbook. Available at www.agbellacademy.org

Mitchell, R.E. & Karchmer, M.A. (2004). Chasing the mythical ten percent: Parental hearing status of deaf and hard of hearing students in the United States. Sign Language Studies, 4, 2, 138-163.

 

Dr. K. Todd Houston, Ph.D., CCC-SLP, LSLS Cert. AVT, is an Associate Professor in the School of Speech-Language Pathology and Audiology at The University of Akron. His primary areas of research include spoken language acquisition in children with hearing loss, strategies for enhancing parent engagement in the intervention process, Auditory-Verbal Therapy, and telepractice. He directs the Telepractice and eLearning Laboratory (TeLL), an initiative to evaluate clinical practices in the area of distance service delivery in Speech-Language Pathology.