1. Family Engagement and Leadership: Partnering Together in an Ever Changing World
Clara

2. National Family Association for Deaf-Blind
Presenters:
Clara Berg, NFADB President;
Edgenie Bellah, NFADB Affiliates Coordinator
DeafBlind International Network of the Americas Conference – Cape Cod – April 2018
Clara

3. National Family Association for Deaf-Blind
 We believe that individuals who are deaf-blind are valued members of society and are entitled to the same opportunities and choices as other members of their community. 

4. National Family Association for Deaf-Blind
MISSION STATEMENT NFADB exists to empower the voices of families of individuals who are deaf-blind and advocate for their unique needs

5. National Family Association for Deaf-Blind
Board of Directors:
5 Officers in the Executive Committee
4 Board Members
3 Special Advisors
1 Policy & Outreach Coordinator
1 Administrative Technician
Clara
501 © (3) Status
Ruled by parents … All volunteers No compensations
Once a year full membership participation in a virtual meeting and once a year full board in person meeting
Every other year (Even years) National Symposium

6. National Family Association for Deaf-Blind
Advocating for all persons who are deaf-blind of any
age and cognitive ability
Serving as a unified voice that supports and advocates for national policies
Connecting people to information and resources
Partnering with national organizations to build strong service systems
Bringing consumer and family voices to researchers and state/national discussions about deaf-blindness
Providing opportunities for state parent groups to become NFADB Affiliates
Clara
Providing support and connections to individual parents. Close work with many of the SDBP from around the country.
Webinars (English & Spanish), Intervener Training OHOA, PtoP,
As consultants to many SDBP and Universities

7. Clara
Born from a group of parents called the Dream Team

8. PARTNERING TOGETHER IN AN EVER CHANGING WORLD
Family Engagement and Leadership:
PARTNERING TOGETHER IN AN EVER CHANGING WORLD
Edgenie

9. Discussion Guiding Believes
Individuals who are deaf-blind are valued and equal members within their communities
Families are at the heart of the community
Families partner with self-advocates and professionals to ensure lifestyle choices that remain steadfast regardless of systems change.
Families bring our unique combination of passion and talents to create essential partnerships that enrich the lives of our loved ones with deaf-blindness. In our ever-changing world, it is critical for the deaf-blind network to work together to ensure that shifts in services will not diminish access to full, happy and productive lives for our family members with deaf-blindness.
When parents start working together unified by a common vision and pushed by the unconditional love they have for their children who are deaf-blind, they can influence laws, create programs, change the dynamics of academic instruction, etc. Family organizations representing parents at a State or National Level speak with one voice and their message can impact how services for their children or adult are provided.

10. Family Challenges
Acquiring the knowledge they need to effectively engage with systems
Families are widely dispersed
We could generate this as a group discussion
**** Can we add: Cultural issues, Family issues (other members in the family), Health issues, Financial crisis, etc

11. Turning Challenges Into Opportunities
Everyone Benefits When Families are Fully Engaged & Providing Leadership!
Family Engagement
Leadership:
Family Leadership
Self-Advocacy Through Example
Across The Lifespan:
Family engagement is the key to turning these challenges into opportunities for success across the lifespan.

12. What is Family Engagement ?
Let’s Discuss!
What does family engagement mean to you?
What are some examples of how family engagement?

13. Family Engagement Network Systems Community Family
Research shows that when families actively engage in their child’s education and services, their children do better in school and have effective plans in place to have successful adult lives.

14. Family Engagement Means Respect for family’s expertise
Strength’s based
To have the power to speak and be heard
To cultivate relationships
Opportunities for involvement
Collaboration goals and strategies
Addressing barriers
Addressing needs of the family
Partnerships
Philosophy, politics and practices

15. What is Family Leadership
Let’s Discuss!
What does family leadership mean to you?
What are some examples of
family leadership?
Tie it to systems improvement for ensuring that individuals who are Deaf-Blind are valued and equal members within their communities.

16. Family Leadership Upgrade school and adult service facilities
Improve school and adult services leadership and staffing
Obtain higher quality programs for students
Incorporate new resources and programs to ensure effective programming
Increase funding for deaf-blind programs
Create and sustain adult service programs specifically designed for adults with deaf-blindness
Research highlights that self-advocacy is rooted in having family members and community mentors who teach leadership through their own efforts.
Research also reinforces that family leadership is one most powerful strategies to influence policies and practices that are critical for ensuring that individuals who are deaf-blind are valued and equal members within their communities. Family leaders have been able to:
Upgrade school and adult service facilities
Improve school and adult services leadership and staffing
Obtain higher quality programs for students
Incorporate new resources and programs to ensure effective programming
Increase funding for deaf-blind programs
Create and sustain adult service programs specifically designed for adults with deaf-blindness
From parents and children, to organizations and professionals, everyone benefits when families are fully engaged and providing leadership.

17. FAMILY Engagement & Leadership across the DBi Network of Americas

18. Opportunities & Tips at All Levels
Let’s Discuss!
Individual
Local
Regional
Global
Discussion Question:
1. How has family engagement and family leadership resulted in creating/sustaining services that promote access to full, happy and productive lives for our family members with deaf-blindness?

19. National Organizations Partnerships  
Example of USA Family & Self-Advocate National Partnership

20. Affiliate Network Purpose
Mobilize a strong national network of families
Serve as a conduit for information sharing
Improve advocacy at the national, state and local levels
Influence national trends and legislation
Engage families and provide leadership development opportunities
Edgenie:
Our intent back in 2008 was to develop a better way to share information at the state and local levels to improve services for people who are db and increase our advocacy efforts. We wanted to build a strong network since there were limited positions on the NFADB board of directors. It was also a plan to develop future leaders at the state level and then bring them to the national level.
Network meets quarterly. Volunteers. Support each other with growing vibrant family organizations and through periods where the organizations may slow dwon or pause in activity. Invite each other to their events. Encourage and share resources.

21. Affiliate Membership
A parent run group whose focus is deaf-blindness. A commitment to partner with NFADB and its mission.
Edgenie
Emphasize that the group MUST be family driven/run!
Willing to participate and be trained on Board Development, How to invite new board members, Fundraising, etc

22. Current Issues for Deaf-Blind Community
Let’s Discuss!
What are some policies, procedures and trends?
How might we work together to address these?
Discussion Question:
2. What opportunities does the DBI Network of Americas have to provide leadership in ensuring services/supports continue to improve?

23. Contact Information
NFADB
141 Middle Neck Road
Sands Point, NY 11050
Edgenie

24. THANK YOU!