Identification and Referral

This initiative provides assistance and tools to support state deafblind projects in their work to increase identification and referral of children who are deafblind. Identification and referral to state deafblind projects is essential so families, early interventionists, educators, and healthcare providers can receive the support they need to provide the unique services children who are deafblind require to learn and thrive.

Initiative Contacts

Emma Fricke
Identification and Referral Initiative Lead
- efricke@helenkeller.org
- (971) 430-7044

NCDB Support

NCDB provides support to state deafblind projects as they engage in systems-change activities to improve identification and referral of children who are deafblind. Our support includes:

Consultation regarding use of the Early Identification and Referral Self-Assessment Guide to analyze the effectiveness of a state's EI&R activities and identify strategies to improve them
A peer-learning community (PLC) on increasing identification and referral efforts
Intensive systems TA on improving identification through work with state systems including Part C, EHDI, state education departments, the health care system, and community providers

Tools for TA

Hearing Assessment in Infants, Children, and Adolescents: Recommendations Beyond Neonatal Screening
An article published in Pediatrics, which includes the statement, "All children who are D/HH should have a thorough ophthalmologic evaluation to identify associated conditions."

Promoting Early Identification and Intervention for Children Who Are Deaf or Hard of Hearing, Children with Vision Impairment, and Children with DeafBlind Conditions
Published in The Journal of Early Hearing Detection and Intervention.

Range of Combined Vision and Hearing Loss in Deaf-Blindness
Table showing different combinations of degrees of vision and hearing loss.

Newborn Screening

Newborn screening is an essential public health service. State deafblind project staff can use the resources in this section to learn more about screening and to share with families. Typically performed within 24 to 48 hours after a baby is born, and in most cases, while still in the hospital, newborn screening is made up of three parts: a blood test, a hearing screening, and a heart screening. Specific screening programs vary by state.

Infants who do not pass a hearing screening should receive a full hearing test as soon as possible, but no later than 3 months of age. If diagnosed as deaf or hard of hearing, they should have an ophthalmologic evaluation.

The Newborn Screening Family Education Program provides educational and training resources for families, including online courses to help families, learn more about newborn screening and gain skills to advocate for their child. Materials include:

A short online book called Navigate Newborn Screening
A 3½-minute video, The Cohen's Journey Through an Out-of-Range Newborn Screening Result, with an example of what happens when a family receives an out-of-range result for their newborn
Register for the Newborn Screening Quick Bite Modules, designed for families to deepen their knowledge about newborn screening.