Building Communities of Support for Families of Children with Deaf-Blindness Edgenie Bellah, Family Engagement Coordinator, TX Deaf-Blind Project Megan Cote, Initiative Lead for Family Engagement and Early Intervention, NCDB Pam Kissoondyal, Family Engagement Coordinator for FL Deaf-Blind Project Patti McGowan, Family Engagement Coordinator for PA Deaf-Blind Project

Deaf-Blind Network Deaf-Blind Network Vision Statement: Children and youth who are deaf-blind receive supports and services that allow them to experience full integration and participation in society including education, employment, community, and social relationships. Our Mission is to provide families, professionals, and the community with: Opportunities for shared leadership and collaboration A national network of supports and services across the age range Personnel who are qualified and knowledgeable Systems with improved capacity Because NCDB and State Deaf-Blind Projects are all in the business of improving the lives of children with deaf-blindness and their families and both have limited staff and funding, partnering to share resources, ideas and talents was a critical component in creating the best outcomes for children.

The 6 National Deaf-Blind Initiatives: Early Identification and Referral Family Engagement Interveners and Qualified Personnel Transition Literacy Child Count These 6 initiatives/ priorities were established by the Office of Special Education Programs as areas for focus for the state projects and the national center. Each state determines in what way(s) they want to spend time working on these initiatives in a way that meets the needs and gaps in their states.

https://nationaldb.org/library/page/2658 Recommended Knowledge and Skills for State Deaf-Blind Project Family Engagement Coordinators (FECs) The primary purpose of having a set of agreed-upon knowledge and skills is to serve as a guide for identifying and designing training opportunities. They are broken down into the following categories based on knowledge and skill: Educational and Developmental Needs of Children Who Are Deaf- Blind Accessing and Influencing Services and Systems Consultation, Training, and Technical Assistance https://nationaldb.org/library/page/2658 So we got busy creating a Recommended Knowledge and Skill set document for those serving in the role of Family Engagement Coordinator. This work has begun to help professionalize the role for which there really is no degree. To see the all that’s contained in this document, you can take a peek at the link @ the bottom of the slide.

How do I find the contact information for my state deaf-blind project? Go to the NCDB website: https://nationaldb.org/ On the main page there is an interactive map for you to click on your state and the project information will appear OR, you can go to the “Connections” tab and click on “State Projects” to find a the comprehensive list of all projects.

Why FECs felt the needed to meet Group goals: Build the network of Family Engagement Coordinators with the Deaf-Blind Projects Collaborate on state project grant activities Share experiences, resources and expand the knowledge of effective strategies for serving families Celebrate accomplishments Learn and practice a facilitation method that can be used in team meetings as well as group discussions with families and professionals Often FECs are hired on an extremely part-time level and there are numerous needs to support in their respective states, so the need to meet became very apparent for the following reasons (see list on slide). Plus, a unique aspect of this role is most often those in this position are not only FECs but are also parents of children with deaf-blindness. This gives them an interesting perspective on their work and they often wear multiple hats. Since the role is so unique, it can feel isolating. And there is no college degree to prepare someone for this role, which creates a critical need to come together and collaborate to build knowledge and skills.

How did we start Started meeting in February of 2015 with 12 members Have been meeting monthly for 90 minutes Participants span 4 time zones across the US Members of the group are those serving in the role of FEC or, in some cases where projects are small, it could be other project staff. Over the last 3 years, the group has grown to 41 strong The Mastermind format is used to help guide planning and facilitation of the meetings As the group has grown, there has been conversation about dividing into smaller Mastermind groups, but it was unanimous that the group wanted to stay as one because of the caring community that has been created

The Mastermind Format Welcome and Announcements Quote - a Mastermind group member will share an inspirational quote Recent Success - members share a brief statement about a recent successful experience Conversation Time - members share a brief challenge or project with the goal of gaining perspective and suggestions from the other members Takeaway - members share something they gained from the Mastermind session Appreciation/Gratefulness - member share something they appreciate or feel grateful for Closing

Primary Benefits of the Mastermind Group Building trusting relationships - a foundation of trust is the cornerstone of successful collaboration and a willingness to share Now the FECs understand members levels of expertise and experience, so can rely on one another to connect parents to the best information and support Timely knowledge and information shared at the meetings allows participants to be proactive and innovative in serving their families Increased job efficiency Constantly thinking as a group about what to share and how to share it. Getting national info first hand - Then you can take that info and bring it back to your SDBP -Then you can bring that down to families in your state at their local level. It’s networking at its best!

Primary Benefits of the Mastermind Group (cont.) Synergy - together we keep coming up with things better than if we did them individually The predictability of meeting time and format allows participants to reflect on their work and improve strategies for supporting families It invites open conversation and creativity Members get hooked because they know solutions will be shared for common needs “It truly is networking at its best”

What have we accomplished in the last 3 years? A secure network of FECs that are a “pool” of support for one another. We have sent out Friday Family Fun Facts monthly since September of 2015 for a grand total of 137 facts. Add the reach has spanned from 151 to as many as 64,443 for a SINGLE fact! https://nationaldb.org/pages/show/dbfamilyfunfacts We got to meet in person in TX for training the Summer of 2016. The MM Scarf has been moving all over the country since November of 2016 celebrating your work and the amazing support you provide to families in your states. https://nationaldb.org/wiki/page/10/746

What have we accomplished in the last 3 years? (cont.) Monthly Family Learning Opportunities Flyer: https://nationaldb.org/materials/page/3108/10 We are being identified to serve in various ways because of our knowledge and skill Family-to-Family Communities (F2FC) - many FECs have been facilitators for these groups and have benefitted from the training provided for facilitators Increased number of webinars where FECs have shared their knowledge and skill FECs are serving on the board of NFADB as well other deaf-blind organizations Increased sharing with other deaf-blind organizations - such as the CHARGE Syndrome Foundation, NFADB, Helen Keller National Center, and the Usher Coalition (to name a few)

4 Mastermind Subcommittees In May of 2017, in response to the National Family Needs Survey the Family Engagement Coordinators created 4 subcommittees who are working hard to synthesize information and process for family engagement: 1) AT/ Communication - iCanConnect webinar & a 2 part communication webinar series 2) Family Leadership - defining what knowledge and skill deaf-blind family leaders need to know to navigate for their own child and the broader community

4 Mastermind Subcommittees (cont.) 3) Reaching Families - how can we best capture family outcomes? Looking at categories of the types of technical assistance state deaf-blind projects provide (universal, targeted and intensive) as well as the best ways to capture it for state as well as national outcomes. 4) Birth to 3 - Parent's Story webinar, Family Stories on NFADB website, universal welcome letter for projects to use for family members of newly identified infants and toddlers, list of resources to be shared with families of newborns, universal transition letter for parents about how to plan for the transition from Part C to Part B, and a planning checklist.

National Peer-to-Peer Grief Support For the last 7 years, an average of 91 kids with deaf-blindness have died annually on the national child count. Because of this, a group of FECs created and facilitated the first ever national peer-to-peer grief group for families of children with deaf- blindness. They got trained in peer-to-peer grief support, modified a curriculum to use with the group, and created an online list of resources for families and providers to access, as needed. There are now 2 levels of online grief support as well as a Facebook group for participants For more information: https://nationaldb.org/wiki/page/10/757

The Power of the Group Grateful Empowerment Respect Here’s what our fellow FECs have to say about the power of the group: Grateful Empowerment Respect Community of support Resources Hope & Wishes Peaceful Friendship Connection Wealth of information & support Personal growth Amazement Selfless Humble Fun Have the FECs that are there stand up and be represented.

Our contact information Edgenie Bellah - EdgenieBellah@tsbvi.edu Megan Cote - megan.cote@hknc.org Pam Kissoondyal - pamsk@ufl.edu Patti McGowan- pmcgowan@pattan.net

Discussion Questions: On a international level, what does supporting families and guardians look like? How are family leaders and/or personnel working with families being supported in this area? (resources available- networking-dissemination of information) Do you see strong collaboration in other areas or groups including deafblindness? (Local, State, National and International) Do you see various types of parent groups evolving around subject matter and/or needs?