Best Practices for how Agencies convey information to Parents about Options for their Deaf Children

The issue

Parent/s/Families whose newborns have been confirmed as deaf or hard of hearing are often confronted with situations which require them to make decisions about communication options before they have had an opportunity to understand the information that has been provided to them about the diagnosis and without having much knowledge about the choices. Information is often provided during a very sensitive and emotional period to parents who are struggling to adjust to their newborn and the many changes that have happened since the arrival of their new family member. Information that is shared may be biased toward a particular communication option, such as when a professional discusses a specific communication approach/method and does not share that some children reach the same outcomes with other approaches, or may not provide information to parents that communication approaches might be simultaneously or sequentially used, or may share with parents that there is a sensitive period for the development of the brain for a specific access to language without acknowledging that there is a sensitive period for access to language through any approach or may be shared by a professional who has limited experience with all communication options.

The research literature does not provide information about whether certain characteristics of the family and child have better outcomes with one or another or even combinations of the communication options available. Parents are frequently unable to learn about or experience these communication options simultaneously and are often in situations where they must choose one or the other.

What we know

We know that there have been successful outcomes for some families and children in every communication option. Children of diverse backgrounds, diverse hearing status, with or without additional disabilities, of varying language backgrounds, and varying socio-economic backgrounds have been successful when information about communication options and availability of communication options are uniformly available.

Initial contact with families should be provided by professionals with the highest level of experience and knowledge in early childhood deafness and hearing loss. The length of this initial contact, determined by family need, may differ the in number of interactions. These professionals should have counseling skills to assist the family with adapting to the diagnosis, as well as be able to answer the family’s questions about hearing loss, impact on their child and family, the diagnostic evaluation, and next steps.

This professional should be able to explain and demonstrate the different communication opportunities/options to the family and any accommodations that might be required because of additional disabilities or considerations.

Parents should be able to explore listening and spoken language options and visual language options simultaneously, so that they do not experience emotional distress about having to choose different options. Parents can decide with experience which option or combination of options works best for their family and child.

Language access as early as possible in any communication approach leads to better outcomes than when language access is delayed or is limited.

What we don’t know

We know much less about the families and children who have not found success with specific communication approaches.   There are no comparative studies demonstrating that one approach has better outcomes than another.  Family commitment to the approach plays a significant role in the success of an approach.

Implications

Information needs to be presented in an unbiased manner by knowledgeable professionals and should be presented in a variety of ways including print materials, discussion, demonstrations, websites, and video clips. Information about resources available in the community to support their choice should be shared. Families need to be provided with connections to other families and to adults who are deaf and hard of hearing in order to further explore their choices and options.

Assuring that a child’s language development is commensurate with chronological age and/or cognitive ability is the highest priority. Depending upon the specific needs of individual families and individual children, communication approaches may be a specific approach, a combination of approaches, an approach at one age level and a combination or switch to another approach at another stage of development. Families may also find that the real-life stressors of split and melded families, families with multiple caregivers, or daycare situations impact the ability to implement approaches with fidelity, as they were designed. Specific physiological limitations may influence communication approach decisions, such as visual or motor abilities, or neurological factors.

Regular assessments should be part of the programming and results of these assessments used to evaluate the effectiveness of the communication system chosen. The needs of a child can and do change over time; a family needs to be encouraged to change the communication system they are using if it is not effective for their child.

Posted on April 18, 2019 by
Christine Yoshinaga-Itano
University of Colorado
Institute of Cognitive Science
Christie.Yoshi{at}Colorado.edu

Dinah Beams
Marion Downs Center
dbeams{at}comcast.net

Further reading