Build Partnerships

As illustrated in the “Get to Know the Health Care System” section, this system is made up of many separate entities—NICU’s, clinics, private practices, and state agencies. This makes it important to narrow your focus to providers (individuals or agencies) in your state that are most likely to encounter infants and toddlers with deaf-blindness. 

If you are in a small-population state, individual medical practices (e.g., a medical home serving children with complex health care needs) and specialists may be key partners. A large state will likely require a broader approach that involves collaboration among numerous entities as well as statewide representatives of associations such as the American Academy of Pediatrics, and influential ophthalmologists and neonatologists.

Once you have an understanding of the individuals and agencies likely to have the most systemic impact on identification and referral in your state, seek out partners with whom you can collaborate. Opportunities include the following:

• Invite key medical personnel to serve on your advisory board—a medical provider who is interested in or already serving individuals who are deaf-blind can serve as a point of contact for outreach to other appropriate providers
• Invite family members with experience navigating the medical system to serve on your advisory board
• Identify potential contacts at NICUs in your state or bordering states
• Reach out to families who have existing relationships with key medical personnel and ask them to introduce you 
• Reach out to medical personnel with whom you have existing relationships and ask for assistance connecting your project to state medical organizations or health care providers likely to encounter infants and toddlers who are deaf-blind
• Contact school nurses likely to communicate with medical personnel who serve children with the most complex health needs—they can be a great resource for finding allies and making connections 
• Reach out to medical social workers and care coordinators to tell them about your project and learn how they support families 
• Look for opportunities to participate in relevant initiatives such as newborn screening for cytomegalovirus
• Include health care providers on your project’s newsletter or email distribution list