Abstract
Fifty years before Helen Keller met Anne Sullivan and experienced her moment of awakening at the well, Laura Bridgman began her education at Perkins School for the Blind as its first deafblind student. In 1837, Perkins Director Samuel Gridley Howe brought Laura to the school when she was 7 years old after hearing of her dual-sensory impairments and visiting her family in New Hampshire. Laura learned quickly as a communication system was created and techniques for teaching individuals who are deafblind were established. Perkins and Laura became renowned as her story and education gained the attention of the country and the world. Laura continued to learn at Perkins until 1850, when she returned to live with her family in New Hampshire. Her transition to adult life was not successful. Despite having an established communication system and years of schooling, Laura was isolated. She had few people to communicate with and little to do on her family farm. Her health began to decline, and Samuel Gridley Howe once again brought her to Perkins. An endowment was raised for her, and Laura lived at Perkins for the rest of her life (McGinnity, Seymour-Ford, & Andries, 2004).
Laura Bridgman's education did not prepare her for life after school. The skills and knowledge she had learned did not transfer to a meaningful life in rural New Hampshire in the late 1800s. Laura’s world turned upside down as she went from having constant communication companions, engaging recreation, and a busy school schedule to few communication partners and limited opportunities for meaningful work or recreational activities. Few women worked in the mid-1800s. Most women married and were in charge of managing households and raising children. Marriage was an unlikely prospect for Laura, and her mental and physical health declined until she returned to Perkins. 170 years after the end of her education, how has special education changed in improving transition outcomes for individuals who are deafblind?
Individuals who are deafblind constitute one of the most diverse, yet lowest incidence, disability groups, due to their dual-sensory impairments and low population. And unlike Laura Bridgeman and Helen Keller, who lost their vision and hearing in early childhood, the majority of individuals who are deafblind in the United States today have been so since birth, and they tend to be born with additional disabilities. An individual who is deafblind is often neither totally blind nor entirely deaf. Each individual with this dual-sensory impairment is unique in their combination and degree of hearing and vision loss and the addition of other disabilities.
Lack of access often results in lack of opportunity
Deafblindness is a particularly isolating disability because of a lack of access to the environment, including the people in it. This combined sensory deficit can, and often does, create complications in learning and development and in forming and maintaining social and emotional ties with others. The rarity of the disability, the differences in abilities and experiences of individuals who are deafblind, and the difficulties in the development of relationships and communication attest to the need for specialized interventions for and educators with training specific to this population.
Despite the years that have passed since Laura Bridgman's negative transition experience and the rules and systems that have been created to address the transition needs of individuals with disabilities, the post-school outcomes for individuals who are deafblind remain poor. Individuals who are deafblind experience low levels of post–high school education, rates of employment, and independent living. Although there are limited studies on transition for individuals who are deafblind, research has found some predictors of successful outcomes. Cmar, McDonnall, and Markoski (2018) found that paid work experiences in high school and parental expectations of employment are significant predictors of post-school employment for youths who are deafblind. High parental expectations for employment were crucial for students who are deafblind with significant disabilities and correlated with post-school work. The receipt of vocational rehabilitation services was another predictor of continuous work after high school for individuals who are deafblind. Petroff, Pancsofar, and Shaaban (2019) found that students who are deafblind who were educated in inclusive settings and had access to the general education curriculum had better post-school outcomes. Interestingly, they did not find a significant correlation between transition planning and improved outcomes. They suggest that the transition planning that students who are deafblind receive may not be strong enough to meet their intensive needs (Petroff, Pancsofar, & Shaaban, 2019).
Need for improved transition planning and high expectations
History and current research have shown a great need to improve the transition planning and increase our expectations of what life after high school can be for individuals who are deafblind. It is essential to have professionals who are not only trained in the unique needs of individuals who are deafblind, but also who are knowledgeable in assessments, interventions, and setting goals concerning transition to improve the post-school outcomes. Parents of individuals who are deafblind should also receive information on the transition process and the importance of having high expectations for their children to live as independently as possible. Students who are deafblind need access to education that teaches them to build meaningful relationships in the community, increase their independent living skills, and have opportunities for paid employment.
What can members of the transition educational teams do to increase expectations and improve transition outcomes for individuals who are deafblind? This question has been a focus of the Utah Deaf-Blind Project for many years. They have come up with a three-part plan to improve post-school outcomes for students who are deafblind.
Plan to improve post-school outcomes
Increase collaboration
The idea of “increased collaboration” goes beyond the simple notion of sharing knowledge to taking action. Collaboration and change need to take place at the state level, as well as the student level. Key stakeholders in the state must come together and share their knowledge of systems and agencies and identify where there is an overlap of services and gaps. In the state of Utah, the Utah DeafBlind Interagency Team was created to coordinate transition services for youths who are deafblind between Helen Keller National Center, Division of Services for the Blind and Visually Impaired, Division of Services for the Deaf and Hard of Hearing, the Utah Deaf-Blind Project, and the Division of Vocational Rehabilitation. This partnership led to the discovery that of the 45 youths who are deafblind and of transition age in the state, only 20% were connected to adult agencies. The increased knowledge of the services each agency provided, along with the data about where the gaps were, led to the creation of measurable goals to ensure the use of best practices, measure effectiveness, and coordinate services to improve postsecondary outcomes for individuals who are deafblind. This collaboration set the stage for a joint effort for the application and award of a grant offered by the Utah Division of Vocational Rehabilitation to provide Pre-employment Transition Services (Pre-ETS) for students who are deafblind. Helen Keller National Center was awarded the grant and now has a youth service coordinator that provides Pre-ETS to students who are deafblind in the state of Utah.
Increase understanding of the student
Everyone who works with the child, including the child's caregivers, needs to be involved in the transition planning process. Systems’ change at the national and state level means nothing if it is not transferred and funded at the local level. The transition teams of students who are deafblind can be large. They may include the student, their parents or caregivers, a general education teacher, a special education teacher, a representative from the local educational agency, a teacher of students who are visually impaired, a teacher of students who are deaf and hard of hearing, a teacher of students who are deafblind, an orientation and mobility specialist, a physical therapist, an occupational therapist, a speech and language therapist, a school or district transition specialist, a nurse, and an adult agency representative. Each team member brings essential information that, combined, helps to create a complete picture of who the student is, the student's needs, and ideas to support the student's transition plan. Team members should learn from each other to understand the effect of deafblindness and other disabilities on the student's communication, education, social connections, and future plans. Past experiences with work and recreation should be shared, as well as the student's interests, strengths, and needs for accommodations that provide access. The National Center on Deaf-Blindness (2017) has an instrument called the Readiness Evaluation of Transition to Adulthood for Deaf-Blind Youth (READY Tool) that is designed to help a team gather information on the student and create a plan of action to support the transition process (2017).
Increase students' access
The third aspect of the plan outlined by the Utah Deaf-Blind Project is to increase the access students have to experiences with quality transition services. Youths who are deafblind need access to appropriate assessments; participation in transition-focused courses, including the expanded core curriculum; and opportunities for internships and paid employment. Transition meetings need to take place early, starting at the age of 14 years or younger. Adult service providers should be invited as soon as possible to start increasing their knowledge of who the student is and what supports will be necessary for the student's future. It is also essential to think creatively when exploring post–high school education, occupations, leisure, and recreation. Most students who are deafblind will not go on to work traditional full-time jobs. Person-centered planning helps the transition team imagine what life after high school may look like and provide a roadmap for getting there. To raise expectations and improve outcomes, the student needs to have positive work experiences before they graduate. The Utah Deaf-Blind Project is currently working with the Utah School-to-Work Project to run a pilot program with students who are deafblind and have additional disabilities. The goal of the School-to-Work Project is to build the capacity and capability of the transition teams of students with significant disabilities to ensure the students graduate with the skills, experiences, and access to accommodations that provide them with the opportunity to live and work in their communities. The process includes holding frequent transition team meetings, learning about the student who is deafblind through the discovery process, and providing appropriate accommodations and access to paid work experiences while they are in high school. Increased access to quality transition activities for students who are deafblind will help to increase the expectations of employment and lead to improved post–high school outcomes.
Individuals who are deafblind face unique and considerable challenges as they leave school and enter their adult lives. The story of Laura Bridgman’s need for better transition services after her formal schooling is not uncommon today for individuals who are deafblind. Families, school teams, and adult services agencies need to work together to have a clear understanding of the young adult who is deafblind so they may create an exceptional transition plan that works for the individual. Starting planning at an early age, sharing information among team members, and providing meaningful transition activities will help the team work with the student and their family to prepare for life after high school and raise expectations of what that can be. Through collaboration among stakeholders, increased understanding of the student's unique needs, experiences, interests, and access to high-quality transition services and job experiences, students who are deafblind will experience improved transition outcomes.
Readers who work with students who are deafblind may find the following resources helpful as they strive to ensure their students' transitions to adult life are as meaningful as possible: • The National Family Association for Deaf-Blind (http://nfadb.org/ • The National Center on Deaf-Blindness (https://www.nationaldb.org/national-initiatives/transition/) provides information for individuals with deafblindness and the people who work with them. It also has a large library of resources related to transition for individuals who are deafblind. • The Helen Keller National Center for Deaf-Blind Youth and Adults (www.hknc.org) offers training in assistive technology, vocational services, orientation and mobility, communication, and independent living in New York or the individual's own community through HKNC regional representatives. • Parent Training and Information Centers (https://www.parentcenterhub.org/find-your-center/) are state centers that help parents help their children, youths, and young adults with all disabilities to live included, productive lives as members of the community. • State offices of vocational rehabilitation (https://rsa.ed.gov/about/states) are state agencies that support individuals with disabilities in obtaining employment through partnerships with employers, school districts, higher education, and other agencies. • State deafblind projects (https://www.nationaldb.org/state-deaf-blind-projects/) exist in every U.S. state. They provide training, information, resources, and technical assistance to families, educational teams, and the community on educational practices for infants, children, and youth who are deafblind.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.