Promoting Urgency After Diagnosis

The issue

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The vast majority of children who are deaf and hard-of-hearing (DHH) are born to hearing parents and are often unable to access fluent spoken language models from birth. The delays resulting from this early language deprivation often go unnoticed until 2 or 3 years of age (i.e., the age at which children are expected to produce two- and three-word utterances). In order to take advantage of the critical periods for brain development and language acquisition, parents must act quickly after diagnosis. Early intervention services support parents’ ability to provide language access to their child through visual pathways (e.g., sign language) and/or auditory pathways (e.g., spoken language, assistive listening technology). National data from the CDC suggest that at least 25% of young children who are DHH are lost to follow-up (LTF) after diagnosis. LTF refers to children who have not received services consistent with early intervention benchmarks (i.e., identification at one month, diagnosis at three months, intervention at six months). Current national LTF numbers are alarming with some states reporting 0% of DHH children meeting the benchmark for enrollment in intervention by six months of age.

What we know

The research is clear: a quarter of children who are DHH are starting school with language delays of three years or more, with little hope of ever reaching age-appropriate language or literacy outcomes.

Parent surveys indicate that the process for enrollment into intervention can be confusing for parents. A major contributor to parent confusion is the conflicting information from professionals regarding modality options (i.e., sign language, spoken language, simultaneous communication) and their relative benefits. Additionally, parents have communicated that they would like to receive more clear and accurate information about the lifelong implications of the choices they make for their children as infants.

Some states have begun to use literacy rates as an outcome to promote urgency after diagnosis and to encourage families to enroll in early intervention. There are three viable reasons as to why literacy can be used as a common point around which professionals with differing opinions can unite: (1) literacy development is dependent on early and complete language access, (2) literacy is a universally understood and desired outcome for all children who are DHH, and (3) the existing low literacy rate is preventable and avoidable.

Language and Literacy Development – While professionals may disagree on which modality or language children should receive (i.e., spoken English, American Sign Language or another spoken home language), there is no disagreement on the role of language in literacy development. Early language is a prerequisite for literacy. If families delay action after diagnosis, it will almost ensure language delays that will cause difficulties in later literacy development.

Literacy is Universal – Families from diverse socioeconomic and cultural backgrounds may have different definitions and/or levels of desirability for “language” or “communication.” Literacy, however, is universally accepted as an essential outcome due to the high societal value placed on its contribution to successful and productive adult behaviors.

Illiteracy is Preventable – Many families report receiving limited information on literacy acquisition in young children who are DHH, the infamous “4th grade reading ceiling” being the most commonly shared statistic. Preventing the “4th grade reading ceiling” is a strong endorsement for the case of urgent action for families (even if claims of there being such a ceiling are incorrect).

What we don’t know

DHH children live in diverse communities with varied state-level systems that have unique strengths and weaknesses that can influence the ability to support a child’s language access and development. Specifically, accessible, outcomes-based services as a part of a larger, coordinated system of care will reduce confusion for families and produce better outcomes for children who are DHH. Unfortunately, there is a dearth of research on how to bring together the medical community, typically the first point of entry into the system, with the public health sector, educational services, private services, and the culturally Deaf community. This lack of coordination and cooperation can have devastating effects on parents’ ability to make timely choices and take action to prevent delays in language and development.

Implications

It is clear that the current lost to follow-up statistics reflect a growing national, but entirely preventable crisis. Something must be done now. The field can no longer allow children to lose precious time during critical periods of early brain development and language acquisition. Language is a prerequisite for literacy. Literacy is a universally understood and desired outcome for all children who are DHH and can be used to promote a sense of shared urgency for professionals working with families.

 

Posted on Oct 6, 2016 by
Jessica Page Bergeron
Atlanta Speech School
jbergeron {at} atlantaspeechschool.org

Stacey Lynn Tucci
Georgia Pathway to Language and Literacy
stacey2chi {at} gmail.com

Kenney Moore
Georgia Department of Education
kemoore (at} doe.k12.ga.us

Comer Yates
Atlanta Speech School
cyates@atlantaspeechschool.org

Further reading