State of the State, Nation and World, Teacher of Students who are Deafblind, Family Stories (March 1, 2021)

March 1, 2021 – Kickoff Day for the 2021 Texas Symposium on Deafblind Education

 

State of the State, Nation, and Hemisphere

March 1, 2021, saw the kickoff of the 2021 Texas Symposium on Deafblind Education. What a terrific start it was. We had representatives from Argentina, Bolivia, Brazil, Canada, Chile, Columbia, Dominican Republic, Ecuador, El Salvador, Guam, Guatemala, India, Mexico, The Netherlands, Nicaragua, Spain, The United Kingdom, Venezuela, and the Virgin Islands, not to mention from across the United States. 

The first session of the day, State of the State, the Nation, and the Hemisphere. Nicholas Trotter, Texas Deafblind Project Grant Director, spoke first, and gave his thanks to all the educators, paraeducators and other educational staff for their work during the very difficult time of COVID-19 Pandemic. He announced several updates of interest to parents and educators in the field of deafblind education in Texas. The first, the development of teacher of deafblind certification standards approved.  A test framework for certifying teachers will soon go out for review by teachers, administrators, and university personnel. Following this process these certification standards will be posted for public review and comment. Then the vendor will create the test, conduct a review and then begin to administer it to candidates for TDB. 

The second item, supplemental special education services (SSES) which are available to students enrolled in special education in Texas, are online accounts for parents and caregivers with eligible students who have been impacted by COVID-19 school closures. The accounts can be used to obtain special education resources, supplies or services up to $1500 per student. These include  such things as tutoring services, OT/PT therapies, textbooks and other instructional materials, computer hard- and soft-ware, or other technological devices used for education purposes. These requests are reviewed on a case-by-case basis for approval. 

 It was great to get updates on the state of deafblind education from the perspective of family members and professionals working in various locations around the world.  Sam Morgan, Director for NCDB, spoke about the impact of COVID and the inequities that have occurred in our country for various groups that impact our students who are deafblind. Families of children who have the most significant disabilities and families of color have had a much greater burden to bear during this time.  He called on us to face the inequities in our field and move forward to address them. Services and systems, such as those coming into being around teachers of students who are deafblind and interveners, are moving forward and growing nationally. We must address racial diversity in recruiting new professionals and paraprofessionals entering the field. We need to continue to elevate the voices of families and make them central to decision-making in the field of deafblind education. We need to continue to improve the identification of students who are deafblind, especially in the earliest years of a child’s life. Finally, the push to include language from Cogswell-Macy Act into the reauthorization of IDEA is important and the advocacy of all families and educators is needed.

Patti McGowan, President of NFADB,  reminded us that NFADB is the largest non-profit organization empowering families of individuals who are deafblind. NFADB exists to empower the voices of families of individuals who are deafblind and advocate for their unique needs. NFADB includes membership of families, professionals, agencies and organizations that wish to empower the voices of families of individuals who are deafblind. Patti reminded family members to be sure and join NFADB representatives during the Family Day on Saturday, March 6th. Besides working on some internal matters related to NFADB, the board created the Adult Life committee to help address advocacy around the needs of the families of adult children who are deafblind. They also moderate a private Facebook page for families with adult life issues and has recruited these families to share their stories on the NFADB website. NFADB is also working to strengthen its affiliate network of family organizations for families and individuals who are deafblind. Many of the members of the affiliate network are helping to host events  or present at the Symposium. The Development Committee hosted the 4th annual Deafblind Experience virtually. and ran a 25th anniversary campaign to celebrate NFADB’s start. Patti reminded us that we can contribute to NFADB by using Amazon Smile and designated NFADB as the recipient. The Outreach Committee is continuing to work toward it’s goal of connecting with all families of individuals who are deafblind to provide information, resources and supports. COVID has greatly impacted the work of NFADB, but they have persevered using social media platforms including a virtual graduation party for the class of 2020, provided information in support of National Rare Disease Day, Deafblindness Awareness Week, and National Disabilities Employment Awareness Month. NFADB announced the creation of the Steve Perrault Award honoring individual who create a lasting and profound impact on the quality of life for individuals with deafblindness and their families. NFADB will begin an ambassador training to develop leaders in every state to support the families in their state. The Public Information and Education Committee (PIE) provides support for or makes recommendations for particular policies and causes that will benefit the Deafblind Community. This committee had developed three position papers to date: Intervener Position Paper, Teacher of Deafblind Position Paper and Qualified Personnel Position Paper. These papers are meant to help families in their individual advocacy efforts. A PIE webpage will soon be created on the NFADB website. To learn more about PIE, listen to the presentation on Saturday by Jacqueline Izaguirre and Melanie Knapp.

Marianne Riggio, representing Deafblind International, shared the importance of the personal relationships in the field of deafblind education. Based in the Netherland,  it spans 6 continents and seeks to remove barriers for  individuals who are deafblind.  DbI provides opportunities for people to learn from one another and share knowledge through webinars, face-to-face training, and the DbI Review. Their advocacy world-wide has led them to become active in the International Communications Rights Alliance. DbI is also responding the issue of lack of data on the global identification of individuals with deafblindness which means that many people are not accessing resources and health services they need. DbI is working with the World Health Organization to develop standards for recognizing deafblindness, classification of functioning, and health guidelines. This includes research coordination throughout the world. DbI has also expanded regional activities world-wide like this Symposium. In 2022 there will be a conference in Kenya for the African region. In 2024 DbI will hold its world conference in Canada. The 14 networks of DbI include networks focusing on particular regions like the Network of the Americas, populations like Usher Syndrome, and interests like Recreation. DbI of the Americas has created an advisory group, held Zoom meetings with families, cross-regional representation, and planning this conference. She encourages all of us to become members of DbI; the membership is free!

Teacher of Students who are Deafblind: How Did We Get Here?

Robbie Blaha, Cyral Miller, and Chris Montgomery with help from various colleagues and family members took us on the journey Texas has taken to achieve highly qualified personnel for students who are deafblind, interveners and teachers of students who are deafblind. A such a long, strange journey it has been! We now have these positions recognized at the state level and are now focused on developing testing content and question frameworks for certification of teachers of students who are deafblind. The efforts of the Texas Deafblind Project and other organizations have been critical for bringing these system changes about. 

Following their presentation a panel that included Rachel Collins, Melanie Knapp, Dr. Marina McCormick, and Marianne Riggio joined in to discuss the role of the teacher of students who are deafblind and some of the challenges going forward in shaping and promoting this position statewide.

Family Stories

Our final session of the day, Family Stories, brought the house down! We heard from three different individuals, Heather “Hex” Withrow, Sandy Felefli, and Amita Srinavasan.  Both Heather and Sandy are parents of children who are deafblind and Amita is a person who is deafblind as a result of Usher Syndrome. Their presentations reminded all of us why we are so passionate about deafblind education.  

Tactile Exploration of Plastic Cow
A young deafblind boy tactilely explores a life-size plastic cow at the ice cream shop.

….I want to start with some key concepts that have made a profound difference in my daughter’s education and her life. Knowing that as parents we are our children’s first educators, I kept coming back to a fundamental question which is, “What does it really mean to ‘educate’?” So there is the more obvious meaning which is to transfer knowledge such as when we teach a child to recite their ABCs or to add numbers or to sing a song. But the other definition of the word ‘educate’ is to lead out. This is an incredibly important concept because leading out and,  particularly in the context of a child with deafblindness, really means to make someone’s world bigger than it would have otherwise been. And the crux of the distinction between those two definitions is that the first one involves process, but the second involves a commitment and a mission which I think are the essence of what it means to be a good educator.

Comment from Sandy Felefli

 

(Heather and her husband, Tom, are deaf as is their son, Skylar. Their daughter, Anita, is sighted-hearing.) We knew before Orion was born that he would be deafblind…and I was very happy that someone from Maryland’s deafblind project could meet with me, and that was Donna. Thank you Donna.

 

The doctor pulled him out and he was white, just about as white as could be……I didn’t expect him to be snow white, he had snow white hair. I mean, it was awesome! We had already decided to name him Orion, oh, months back, and when he was born with this white hair…it was really just a perfect match. White hair, just like the stars! It was amazing. So all of these things that had lined up before his birth, gave us the opportunity to really celebrate his birth. We didn’t have any surprises. We were happy. We did not have any tears except tears of amazement.

Comments from Heather “Hex” Withrow

 

There is a lot of ableism that we face, not just in education, but in society as well. We need a collective voice to speak up and to be heard. We need leadership run by deafblind people who can understand our struggle. For the younger students who are still in school we need mentors who can teach them about advocacy and leadership.

Comments from Amita Srinavasan