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.