In this post: EHDI’s 10 year history, parent grief, outcomes for children who are deaf-blind with CIs, teleintervention, and more. Read on!
On Monday at EHDI, I attended many interesting sessions and presented my poster on “Cochlear Implants and Listening and Spoken Language for Children with Hearing Loss and Additional Disabilities.” Thank you so much for all of the parents who shared their stories and helped with my project — many attendees stopped and had lots of questions! It was wonderful to have a chance to speak with early interventionists, pediatricians, and audiologists, some of whom were serving deaf+ children with CIs for the very first time in their practices. Together, we will make a bright future for those children, and all children with hearing loss!
Here are the notes I took at Monday’s presentations:
Opening Plenary: Ten Years of EHDI
Bonnie Strickland, John Eichwald, Louis Cooper, and Karl White
Bonnie Strickland from HRSA, the Health Resources Service Administration, began the opening session with some history of the Early Hearing Detection and Intervention program. In 1993, 10% of babies born in the U.S. were screened for hearing loss, and the average age of identification was 27 months. By 2010, we now have 97% of babies screened, and the average age of identification is between two and four months of age. This is amazing progress, and it is no doubt giving children with hearing loss and their families more chances than ever to get and early start to a bright future. Ten years ago, the challenge was to screen the babies. Now, we can screen them, but the challenge is to strengthen community resources and decrease loss to follow-up (children who do not pass the newborn hearing screen but fail to return for follow-up audiological testing).
Louis Cooper of the American Academy of Pediatrics reflected upon his decades of involvement in the hearing screening movement and began with this incredible statement, “The condition which once contributed to greater than 50% of childhood deafness is not mentioned once in [this year’s] program.”
Do you know what it is? Rubella.
John Eichwald of the CDC reiterated EHDI’s 1-3-6 model. All babies should be screened by 1 month. If they do not pass the initial screening, they should receive a diagnostic audiological evaluation by 2 months, and be enrolled in an appropriate early intervention program by 6 months. In the United States, 26, 218, 838 babies have been screened for hearing loss since 1999. This is wonderful news!
The bad news? Of children who do not pass the initial hearing screen, 43% do not return for further testing, and are considered a “loss to follow-up.” What becomes of these children?
In the future, Eichwald and his colleagues hope that information technology will allow providers, like pediatricians and community health organizations, will have access to all children’s newborn screening records – those who passed and those who did not. In this case, no news is NOT good news!
Karl White discussed “Celebrating the Past and Shaping the Future” of EHDI. Did you know that newborn hearing screening was first proposed in England in 1944? Wow! White shared this inspiring quote from Sir Isaac Newton, “If I have seen further, it is only by standing upon the shoulders of ye giants.”
We stand on the shoulders of so many greats. Where will we go from here?
Once Is Not Enough
Alberg, the Director of BEGINNINGS for Parents of Children Who Are Deaf or Hard of Hearing discussed the grief process that many parents undergo after discovering that their baby is deaf or hard of hearing. She emphasized the need for early intervention therapists/teachers, medical providers, and other professionals to ask parents, “How are you doing?” and to pay attention to how grief can inhibit or lessen a family’s ability to fully participate in therapy. The child’s degree and type of hearing loss are not correlated with the depth of the parent’s grief. Just because the diagnosis of a mild, unilateral hearing loss seems less severe to professionals doesn’t mean it isn’t a significant, life-changing event for a parent and a family. Men and women grieve differently, too, so parents may have different styles or levels of grief between themselves. Grief processes, and their impact on therapy, can also affect extended family members. If grandparents are in denial of the child’s hearing loss and tell the parent that, “He doesn’t need those ugly hearing aids,” parents may be less likely to give their child the all waking hours access to sound that he needs to grow his auditory brain. Grief is personal, unique, and random, and it hits parents in different ways at different times. It is a powerful force, not to be ignored if our goal is to help families help their children become the best that they can be.
Outcomes in Children Who Are Deaf-Blind with Cochlear Implants
Susan Wiley Kathleen Stremel Thomas, and Mark Schalock
These presenters shared data from a project being conducted at Children’s Hospital of Cincinnati. Children with hearing loss are 2-3 times more likely than their hearing peers to develop vision problems (Guy et al., 2003). This can be due to syndromes, birth complications, or a host of other causes (including unknown!). When a child is identified with a hearing loss, it is important for him to have a full opthalmologic evaluation as well as regular vision checks.
Like deafness, the world of vision impairment has a language of terms and jargon all its own. Legal blindness is visual acuity of 20/200 or less in the better eye, but blindness can also apply to people who have limited visual field (20 degrees or less in the better eye), which can impact peripheral vision and scanning ability. People with visual impairment may be totally blind, have light perception only, or be classified as “low vision” (significant visual impairment but some usable vision). Cortical visual impairment, or cortical blindness, is vision impairment that results not from a problem in the eye, but in the visual pathways or visual cortex of the brain. Perhaps more important than these terms about visual acuity, is how the person uses whatever vision he has. This is called visual functioning, and it is critical to assess how the child uses what vision he has, regardless of the level of impairment.
Red flags for vision in children include:
Poor visual regard (doesn’t look at people, things in the environment)
Poor tracking (doesn’t follow objects moving through space, up or down, across)
Wiggling or wandering eyes
Head tilt (while this may be due to a physical factor like torticollis, children with visual impairment may tilt their heads to optimize their viewing ability however is best for them)
For this study, the researchers used the Reynell-Zinkin developmental assessment for children who are deafblind as well as other measures of communication, symbolic behavior, language, auditory function, and speech intelligibility. Results included evidence that the child’s cognitive level was significantly correlated with receptive and expressive language outcomes, but typical predictors like age at implant and duration of implant use may have been weakly correlated, but were not significant in this study.
The researchers gave a few suggestions for professionals working with deafblind children who have cochlear implants. They recommended a functional vision assessment for these children, conducted by a teacher of the visually impaired, to determine the best lighting, angle, font, size, contrast, speed, and tactile enhancements for the optimization of the child’s visual ability. Adaptations to therapy programs may include increased processing time, using touch cues and object cues (e.g. touching a spoon means eating time), presenting inforation consistently and slowly, and waiting for reactions or anticipation behaviors that indicate understanding, however subtle.
Resources on deaf-blindness include:
Teleintervention: A Model Program of Service Delivery
Diane Behl and Todd Houston
Behl and Houston presented information on their teleintervention program out of Utah State University. In this project, listening and spoken language services were delivered to families with children who are D/HOH in their homes via Tandberg videoconference equipment from clinicians at the university-based clinic. Advantages of teleintervention over a traditional home visit include the ability to provide specialized AVT services to rural areas, fewer cancellations, and the ability to record sessions for sharing with other professionals on the child’s team, other family members, or for the therapist to review. Behl also noted that this arrangement forces the therapist to work on coaching the parent to lead the session. The therapist can take advantage of technology with prompts via text or headphone to subtly cue the parent to make modifications to activities during the session.
Successful teleintervention requires a special set of skills for the service provider. Clinicians must have “remote” management skills and an understanding of adult learning, as they are coaching parents to be their children’s primary language teachers. In this project, parents responded very favorably to the teleintervention, citing improvements in their ability to be parent-therapists, as well a added convenience by removing the need to pack everyone up and drive long distances for therapy services.
Some tips that the therapists in this project learned from experience include;
Send a box of materials (toys, games, books, etc.) to the family to be used for 2-3 weeks of therapy sessions
Use a document camera on the therapist’s end to make smaller toys or books more visible to families at home over the computer
Buy bigger toys for the therapist to use to increase visibility
Future research in teleintervention may include investigation into questions such as:
Is teleintervention cost-effective?
How much acoustic and visual clarity is needed? How high-quality must the mics and cameras be for successful therapy? Do you need high-end equipment or will a free service like Skype be just fine?
Is it possibly to connect with parents and children emotionally through video alone or should face-to-face visits be incorporated into teleintervention programs?
Does teleintervention work for other services like physical and occupational therapy?
Are some families better at teleintervention than others? Are some therapists better at teleintervention than others?