Providing Services to Students who are Deafblind: Coming together as a field
by Lanya McKittrick, PhD
collaboration, deaf-blindness, visual impairment, deafness, IEP, Social Emotional Learning
For our family, like many others, the first few weeks of remote learning were overwhelmingly hard. I was worried initially that my son, Dalton, a sixth-grader who has Usher syndrome and as a result is deafblind, would not be able to receive his IEP services and that he’d be unable to access his curriculum from home. I was also worried about how I was going to support him at home, while working and juggling the multiple priorities of a family of six. I didn’t want Dalton to regress academically or socially.
Students who are deafblind are a heterogeneous population. The effects and experience of deafblindness vary for each person. Dual sensory vision and hearing loss can create unique challenges when it comes to education. According to the National Center on Deaf-Blindness census, 14.2 percent of deafblind school-age students are taught in inclusive classrooms at least 80 percent of the day, and over 60 percent are educated in inclusive settings at least some of the day. (NCES, 2018). Social-emotional support and continuity of services is important for students who are deafblind because dual sensory loss can create feelings of isolation—feelings that can be even more prevalent during these uncertain times. This means that during this pandemic, it’s imperative that students continue to be able to access the curriculum and receive their needed services and supports, and that within this context of continuing support, IEP teams consider both academic progress and the social-emotional health of students.
Strategies for Accessing Curriculum, Supports, and Services at a Distance
But how is it possible to continue to serve these students when meeting in person is not possible? Flexibility and collaboration, both with families and with other educators, is vital. Professionals in the fields of visual impairments and deaf/hard of hearing are finding creative ways to support each other during this time. Professionals are also finding an even stronger need to partner with families. Bottom line? While it’s true that not every service is possible right now, there are many things that can be done.
As a parent, I see this time as an opportunity to slow down and to prioritize other areas of the Expanded Core Curriculum (ECC) that have not previously been a focus for our family. The ECC defines a set of concepts and skills that require specialized instruction to support students who are blind or visually impaired in order to compensate for decreased opportunities to learn as a result of perceptual differences. The ECC includes skills like assistive technology, compensatory skills, orientation and mobility, self-determination, and social interaction.
In March, American Printing House for the Blind, California State University–LA, and Paths to Literacy (a joint project of Texas School for the Blind and Visually Impaired and Perkins School for the Blind), collaborated and began offering free virtual lessons on topics related to the ECC, for students with various abilities. The Virtual Expanded Core Education Learning (Virtual ExCEL) program has been very popular with educators and families, modeling ways services can be provided virtually.
Orientation and mobility (O&M) services are among the most difficult types of services to provide virtually, because things like white cane training are hard to do at a distance. But that doesn’t mean learning has to stop. Tracy Spohn, an O&M specialist, has found a fun way to make O&M services virtual by creating and sharing weekly podcasts openly to the field. The homeBOUND FOR ADVENTURE podcasts focus on topics such as community, maps and measurements, and landmarks and cues. Similarly, Dr. Rebecca Sheffield just began a podcast series, It’s My Job, where she facilitates an interview between a student who has a visual impairment and a professional who is visually impaired. These interviews are driven by career-related questions that are pertinent to the student. The goal of these podcasts is to find an interesting, engaging way to provide students information related to the career-awareness segment of the ECC. Parentmobility.com even has developed video trainings aimed at helping parents understand a variety of O&M topics.
As the school year comes to a close, we’re seeing some exciting and fun virtual summer opportunities for students who are blind or visually impaired. This comes at a great time since many in-person summer camps and opportunities have been canceled. The Inaugural Virtual ExCEL camp is being offered for free. Leader Dogs for the Blind is also offering a virtual summer experience aimed at helping teens build their independence.
“I had wrongly assumed that my son would have to go without services during COVID-19. But in working with his IEP team, I’m now seeing this as an opportunity to work on some different, yet equally important goals. I’m encouraged by how the field is really coming together to serve students and families like mine, in so many creative and fun ways.” —Lanya McKittrick
Our Family’s Journey With Distance Learning
Shortly after schools closed, I was in contact with our IEP team, and that helped me realize that my worries were unwarranted. As we near the end of the school year, I recognize that Dalton is thriving in ways I could have never imagined. He’s receiving weekly virtual tutoring from his Teacher of the Deaf, virtual occupational therapy, virtual check-ins from his related service providers (teacher of the visually impaired and O&M instructor). He’s learning braille remotely, and he’s spending more time focusing on the expanded core curriculum. He’s also receiving one-on-one check-in’s from his special education teacher and his mentor teacher. I believe the positive results are because of: 1) the collaboration among the IEP team, 2) the family support the IEP team is providing, 3) the strong communication between team members, including me and my son, 4) the team taking time to focus on the social emotional needs of my son, and 5) my ability to see firsthand what my son is struggling with and share it with the team.
Dalton shared with me that he feels more supported now than he has ever before. I am no longer concerned about regression and I know that, as an IEP team, we’re stronger than ever. Our experience speaks to what’s possible because of the flexibility and collaboration in the field of deafblindness. Our IEP team is taking the time to reflect on what worked so well for my son, and I have confidence that we’ll be stronger than ever as a team when we’re able to go back to school.
Although it looks different, teachers of the visually impaired, teachers of the deaf, and O&M specialists are finding innovative and creative ways to support the continued needs of students and their families. Although these resources have been created out of a need to find alternatives to being face-to-face, these new resources are going to be helpful after COVID-19 as well.
What we learned/big takeaway
As a parent and an advocate in the field of deafblindness, I have learned that more is possible than I had ever hoped. What’s most important during this time is collaboration between professionals who are serving a child, and with families. With good communication, flexibility, and creativity, children who are deafblind do not need to face potential regression. Finding time to work on the ECC during a normal in-person school day can often be challenging. These virtual options are allowing for additional opportunities.
It’s encouraging to see that experts in the field have come together to provide access to open resources such as those mentioned above. However, we need more resources, especially if we will not be in person in the next school year. We also need more training focused on families, on topics related to the ECC. Since deafblindness is such a low-incidence disability, we need others outside our field to see past the barriers to access for these students—to see the opportunities.
What we are still figuring out
Families like mine appreciate the check-ins, virtual office hours, innovation, and support during these uncertain times. Consistency and continued predictability of those services and supports is vital. Professionals who are providing these services and supports to students and their families are showing their deep commitment to serve students who have low-incidence disabilities. I hope that leaders will continue to support these efforts, recognizing that the support goes far beyond academics.
What I would tell other leaders during this time
Expanded Core Curriculum (ECC) - Lanya McKittrick relates that her family is focusing on the ECC during virtual learning. This resource gives a brief explanation of the ECC and links for further learning.
Virtual Expanded Core Education Learning (Virtual ExCEL) - The case study sites Virtual ExCEL as a popular choice for educators and families during virtual learning. This page provides additional information, including a weekly sample schedule.
homeBOUND FOR ADVENTURE - Lanya cites this podcast as an example of virtual O&M training.
It’s My Job podcast - Lanya cites this podcast as an example of a career awareness resource. This link provides the podcast on YouTube.
Parentmobility.com video trainings - This case study discusses parent support of the virtual learner. This series of videos provides O&M guidance that may be helpful to parents in the absence of in-person services.
The inaugural virtual ExCEL camp - Lanya mentions that many summer camps or other summer opportunities for students with disabilities are being canceled. This link provides sign-up information for one virtual camp.
Leader Dogs for the Blind - As mentioned in the case study, Leader Dogs for the Blind is offering a summer opportunity for teens. This link provides sign-up information.
National Center on Deaf-Blindness. (2018) The 2017 National Child Count of Children and Youth Who Are Deaf-Blind - This case study identifies the settings in which many deaf-blind students are educated. This report provides additional information and statistics.
How TVIs and O&M Instructors are Handling the Challenges of Distance Learning, Part 1 - In this case study, Lanya describes the current educational landscape for students with visual impairments. This resource explains how TVIs and O&M instructors are providing services during this time. American Foundation for the Blind is also partnering with other organizations to survey families and educators. Part 2 of the blog can be found here.
Resources for Providing TA During the COVID-19 Pandemic - Lanya recounts firsthand her experience of the switch to virtual instruction for her son, who is deaf-blind. This resource from the National Center on Deaf-Blindness contains tips for providing technical assistance during COVID-19, with a page also focused on families.
COVID-19: Families Seeking Accessible PreK-12 Remote Education - Lanya attributes some of the success of her son’s virtual instruction to the open lines of communication between she and her son’s school This resource from the National Association of the Deaf includes considerations related to access for students who are deaf or hard of hearing.
Updates and information from the National Deaf Center for Postsecondary Outcomes - Lanya mentions resources from the field to help with post-secondary transition work. This list contains links to resources on topics such as remote interpreting, remote speech-to-text, and other assistive technology and access tips.
Distance Education Resources - This case study outlines many ways that families can provide support to their child with disabilities during virtual learning. This resource from the National Federation of the Blind, contains additional activities that can be done at home.
Home Activities - In this case study, Lanya shares the importance of continued access to academic courses for students with disabilities, including classes such as physical education, music, and art. This resource contains adapted physical education ideas for students who are blind or visually impaired.
Texas School for the Blind and Visually Impaired - Lanya acknowledges the unique challenges of educating students who are deaf-blind. The Texas School for the Blind and Visually Impaired’s website hosts a plethora of helpful content to help families and practitioners rise to these challenges, including self-paced and real-time online courses for students and at-home experiential learning ideas, weekly online discussions for families, and coffee hours for professionals.
At-home activities for your child - Lanya mentions that virtual instruction gives families a chance to see what their children are struggling with and communicate that need with teachers. This resource from Perkins School for the Blind contains at-home activities for students who are visually impaired that families can use to provide extra support in key areas.
Professional Development: The Tennessee Deaf-Blind Project is offering a series of webinars. On May 20, there was an online, all-day conference, Students With Additional Needs in Remote Learning Environments, an Unconference, which included topics specific to visual impairments.
About the Author
Lanya (Lane) McKittrick is a research analyst at the Center on Reinventing Public Education, where she works on projects related to special education and families. Lane completed her PhD in Special Education at the University of Northern Colorado, where she is an adjunct instructor in special education. Her special education research interests are collaboration and family-professional partnerships; services and supports for students who are deafblind and their families; self-determination; student-led IEP’s; post-secondary transition; inclusion; and disability studies. Her research is rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading cause of deafblindness. Lane is the Chair of the Usher Syndrome Coalition and Founder of the Hear See Hope Foundation.