“I am where I am because I believe in all possibilities.” – Whoopi Goldberg
When you assemble a group of committed parents, other family members, and professionals in one room for three days, everything truly does seem possible. I have just returned from a Symposium hosted by the National Family Association for the Deaf-Blind (NFADB) at St. Edward’s University in Austin, Texas. The theme was Mobilizing a Family Leadership Network: Improving Outcomes in Education and Services for Individuals who are Deaf-Blind and it provided three days that were filled with learning activities, networking opportunities, inspiring activities of leadership and advocacy, and lots of fun.
NFADB, a nonprofit 501(c) 3 organization that has served families of individuals who are deaf-blind since 1994, had its first Symposium in 2012. Our dream was to hold a subsequent symposium two years later. Realistically, however, it took four years, but was well worth the wait! To see collaboration in action after four years of discussing national collaborative efforts was an amazing experience and made me feel proud of this low-incidence disability community that I am so fortunate to be part of.
The Symposium was planned and conducted by NFADB’s totally volunteer board, which has 11 members (most are family members of individuals who are deaf-blind) and 6 special advisors. It would not have been possible, however, without the additional support of family leaders from around the country and professional partners that strongly support NFADB and its mission. Sponsors and supporters included the National Center on Deaf-Blindness (NCDB); the Texas Deafblind Project, which is a part of the Texas School for the Blind and Visually Impaired (TSBVI); Perkins; Helen Keller National Center; Ace Charitable Foundation; and the O’Donnell Family.
The Symposium began with two Keynote Speakers, Eduardo Madera and George Stern, inspiring young adults who are members of DeafBlind Citizens in Action (DBCA). Their self-determination and positive outlook on life led me, as a parent, to begin the conference reflecting on abilities rather than disabilities and to the realization, in that very moment, that we are all unique and yet all united regardless of our method of communication or mobility. The Symposium opening also featured an emotionally moving song, “Exploring my World,” written and performed by Crystal and Danielle Morales, two additional members of DBCA.
Other presentations on the first day focused on strategies and resources that participants can use on behalf of their own family members and to support other families. The topics included creating and sustaining effective partnerships, strategies for collaborative decision-making, and tips for finding high-quality, trustworthy information online. During the last two hours of the day, participants had an opportunity to join facilitated topical networking tables. We could each choose two topics out of ten: Adult Services, College, Creating Local Parent/Family Networks, IEPs, Jobs, Medical Issues, Siblings, Social/Friendships, Technology, and Transition. Can you only imagine choosing only two of these topics? I am always in awe of what I as a parent still have to learn, and know I could have learned from each and every one.
The morning of Day 2 was all about a key mission of NFADB, advocating for qualified personnel. It began with Mark Richert, Director of Public Policy for the American Foundation for the Blind, who gave an excellent overview of the goals and provisions of the Cogswell Macy Act; its importance for our students with deafness, blindness, and deafblindness; and ways parents, family members, students, and professionals can become advocates for the Act. Next, Robbie Blaha, a long time national leader in the field of deaf-blindness, addressed the current status and roles of teachers of the deafblind and interveners and how the Cogswell-Macy Act provides an opportunity for the deafblind community to address the essential need for more qualified personnel in school districts and communities. We have teachers of the visually impaired for students with blindness and visual impairment. We have teachers of the deaf for students who are deaf and hard of hearing. Why do we not have teachers for students who are deafblind? Next, there was a panel of three parents and one deafblind adult who shared examples of how qualified personnel made a difference in their lives. Real examples give us all real hope! The final session before lunch was by Chris Woodfill from HKNC. He described HKNC programs that support transition services for youth who are deafblind and gave a nice overview of iCanConnect.
In the afternoon there was another amazing parent panel on how to help your adult child realize his or her dreams. Four parents, one accompanied by her adult son, gave real life examples of success in customized employment, creation of day services, and keys to a happy and positive adult life. At the end of the day, we heard from a parent and her young adult child about how to tell your story in a way that makes a difference, especially to influence and educate policymakers and legislators. It made me realize that it is my story and all of our stories that motivates change. If we don’t tell our stories, we have no one to blame but ourselves.
The beginning of Day 3, which was scheduled for the morning only, was bittersweet. Only three hours to continue to experience the feeling of unity within this community that I not only respect, but embrace. We had a session that encouraged us all to stay engaged with national family initiatives that exist across the deaf-blind network. Noted, were networking opportunities in which family leaders can become involved and encourage other families throughout the country to do the same.
The Symposium closed with action planning and thoughts of moving forward. As we said our good-byes to old and new friends, we each knew we had goals, we were not alone, and our possibilities are endless. It made me think hard about how we as a group can continue the momentum inspired by being together.
By Patti McGowan