Identification and Referral
This initiative provides assistance and tools to support state deaf-blind projects in their work to increase identification and referral of children who are deaf-blind. Identifying these children and referring them to state deaf-blind projects are essential so families, early interventionists, and educators can receive the support they need to provide the services children who are deaf-blind require to learn and thrive.
Initiative Contacts
NCDB Support
NCDB provides support to state deaf-blind projects as they engage in systems-change activities to improve identification and referral of children who are deaf-blind. 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
Assistance
Publications from NCDB
Early Identification and Referral Toolbox
Identification of Children With Deaf-Blindness: Resources for School Administrators
Identification of Usher Syndrome: Information and Resources (New February 2023)
Early Identification and Referral Self-Assessment Guide
Early Identification and Referral of Infants Who are Deaf-Blind (Article)
Publications from Other Sources
The Importance of Identifying Infants and Toddlers With Combined Vision and Hearing Loss
An article in Zero to Three Journal with an example of a newborn who is deaf-blind, data on the population of infants and toddlers, and resources.
Newborn Screening
Newborn screening is an essential public health service. State deaf-blind 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.
Resources
- HRSA Newborn Screening Information Center (includes information about programs in each state)
- Baby’s First Test: What is Newborn Screening?
- Newborn Hearing Screening (EHDI National Technical Resource Center)
- National Genetics Education and Family Support Center
- AAP Policy Statement on Screening Premature Infants for Retinopathy of Prematurity