Delivered by Susanne Morrow and Kathleen LaBeck at the International Symposium on Usher Syndrome Family Conference.

Download the presentation slides here.

Morrow, S.1 and Labeck, K.2

1 New York Deaf-Blind Collaborative, Project Coordinator, Queens College, Queens, NY, USA
2Teacher for Children with Visual Impairments & Deaf-Blindness, Queens College, Queens, NY, USA

Abstract:

Schools for the deaf are prepared to address issues regarding the educational needs for students with hearing loss but they are ill-prepared to address the compounding issue of progressive vision loss. Students with Usher Syndrome, particularly during the transition age years, are in critical need of support from knowledgeable professionals who can address the many questions and uncertainty that lingers. While there are singular resources available in the form of articles and journal publications on the topic, there is no comprehensive curriculum designed to address the myriad needs of students with Usher Syndrome. To address this issue a multi-year Usher Syndrome Support Group (USSG) curriculum was designed and piloted and is adaptable for students in the mainstream.

Adults with Usher Syndrome anecdotally report great frustration and despair having gone through their educational experience without adequate or any information about their diagnosis, prognosis and resources to cope. These feelings of anger and outrage are expressed clearly in “An Open Letter to Our Parents” (http://bit.ly/1q0sIed). Research suggests that early preparation builds a foundation that supports the various aspects of the student’s life thus allowing for psychological reassurance and preparedness for adulthood. This multi-year curriculum addresses the following: etiology, cultural identity, peer-to-peer connections, safety travel, independent living, self-advocacy, self-determination, eye health, environmental modifications, effective communication strategies, technology at school, home and community, laws and citizen rights, transition planning, community resources, and social groups. To maximize the learning style of students, the curriculum was designed in a multidimensional format, which includes live presentation, demonstration and group activity. It also incorporates the use of distance technology to bring guest lecturers who have Usher Syndrome virtually into the sessions.

Another critical thread to the success of students is the early development of vision skills (http://bit.ly/1jKq506). Under the guidance of a Teacher for the Visually Impaired & Orientation & Mobility instructor, it is important for the student to begin to understand how the eye functions, use of trailing skills, use of light as a tool for access, text modification software, etc.

The USSG Curriculum was designed in partnership with the New York State deaf-blind project, a mental health counselor at a state school for the deaf, and reviewed by a deaf-blind family specialist and staff from the national deaf-blind project. This pilot later evolved into an Usher Syndrome Social Group, a safe environment for students and family members to learn and share in a casual, fun environment.