Conclusion

Families who have a child who is deaf-blind experience unique challenges. Consistency and training across providers is an ongoing obstacle. Because of this, agencies and organizations should partner with families and tailor information, connections, and support based on families' expressed needs and lived experiences. Collaboration and coordination among organizations is necessary to address the state and national level priorities expressed by families and summarized in this report. When family voices are elevated and they are an integral part of planning and guiding services and support, better outcomes can be achieved. Leveraging resources from partnering organizations around commonalities could serve to minimize confusion on the part of the family about where to seek training, support, and connection.

“As professionals, we don’t need to have all the answers; we can connect to others in the network to find answers.”