 I am the mom of two boys who are deafblind resulting from Usher syndrome, our oldest being 22. I did not learn about the Expanded Core Curriculum (ECC) until our oldest son was in high school. Until that point, our son’s Individualized Education Program (IEP) team was focused solely on supporting his academic progress. He also had an orientation and mobility specialist who worked with him on cane skills and a teacher of students with visual impairments who consulted on an as-needed basis. Once I started researching the ECC, I saw that self-determination is one of its nine core components and became interested in learning more. Since doing this research study, I have seen the benefits of teaching self-determination firsthand. My oldest son is now graduated from college and living independently. We still have challenges—the pandemic has been tough—but he was a lot more prepared for living across the country without us than he would have been if we hadn’t focused on self-determination in high school. As you’ll read in the findings, self-determination is something that can—and I think should—be taught and practiced at a young age. My youngest son was in elementary school at the time I completed this study. As a result of the knowledge I gained, I wanted to figure out a way for him to work on these skills early so he wasn’t in the same situation as my older son. I worked with his teacher of students with visual impairments (TVI) and the rest of the team, and added self-advocacy and self-determination goals into his IEP. He’s been working on these goals for a few years now and is an active member of his IEP team, making his own choices—with our support. I don’t think any of this would be possible without a strong relationship with our son's IEP team. One of the findings of this study is how important parent involvement is in teaching self-determination. But participants also shared that parents can be a barrier if they don’t buy into the goal, and don’t work on these same skills at home. I can see how families can benefit from embracing self-determination for their children, but the perceived barrier isn’t a simple answer. It’s not that all parents don’t want to collaborate on self-determination—It just may not be the right time for some families or they may not know where to start. I hate to admit this but as a busy mom of four boys, I was aware that many times it was easier to just make decisions for my children instead of fostering their ability to make their own choices, which is what self-determination is. When I decided to do this study, I was at a point in my life where I was—to put it simply—exhausted. I was constantly fighting for their IEP needs and each day blended together. I knew that my then high school-age son wanted to live independently and go to college but this wasn’t going to be possible if he didn’t make his own decisions and advocate for himself. My son, at that point, hadn’t even been involved in his IEP, other than the minimum requirement. I embarked on this study to learn more about self-determination—the benefits and challenges of teaching it. Once I embraced working on these goals I saw real benefits, not just for my sons but for me too. I watched my role shift as my sons became stronger self-advocates as a result of the work on self-determination goals. I found that shifting my focus to supporting their advocacy efforts (advocating with them) instead of fighting so hard to advocate for them was more effective and allowed me to spend more time on nonadvocacy-related activities. It also had a positive impact on our family’s quality of life: I was less worried about our son's future. Teaching self-determination must be individualized because every child who is deafblind has unique needs. What I realized while doing this study is that many people (parents, educators, and vision and hearing professionals) have difficulty defining what self-determination is and, because of competing priorities, find it hard to fit this into an already packed agenda. Others don’t think self-determination is possible for all students. My hope with this study is to increase awareness of the benefits of self-determination so more families will have the opportunity to incorporate self-determination goals into their child's IEP. The purpose of this qualitative research study was to gain an understanding of how self-determination skills are being taught to preschool- and elementary-age students with sensory loss, and the barriers professionals face when teaching those skills. For this study, I did not focus specifically on self-determination for deafblindness, rather visual impairments and deafness and hard of hearing more broadly. The following research questions addressed in this study were:
What is Self-Determination and Self-Advocacy? Self-determination is important because it allows students to become causal agents in their own lives. As the practice of inclusion has been implemented, it has necessitated research focused on how students with disabilities can be causal agents. The psychological construct of self-determination is relevant to students with disabilities because they are at a higher risk for overdependence and a quality of life that is more determined by others and less determined by the individual (Wilton & MacCuspie, 2017). If students with disabilities can learn to be self-determined, they may be better equipped to take control of decisions that impact their futures. Self-determination is a combination of skills, knowledge, and beliefs that enable a person to engage in goal-directed, self-regulated, autonomous behavior. An understanding of one's strengths and limitations together with a belief in oneself as capable and effective are essential to self-determination. When acting by these skills and attitudes, individuals have a greater ability to take control of their lives and assume the role of successful adults. (Field et al., 1998, p. 2).Self-advocacy is one of the characteristic elements of self-determined behavior as outlined by Wehmeyer et al. (1998). Because students with disabilities are at risk of overprotection by those who are in positions of authority, self-advocacy skills are vital (Wilton & MacCuspie, 2017). Training in self-advocacy is a way to promote the leadership skills needed for students to participate in their Individualized Education Program (IEP) meetings, which fosters student empowerment and builds on self-determination skills. Research Study Findings Professionals Play Many Different Roles in Fostering Self-Determination The professionals interviewed identified four primary roles they have when teaching self-determination to students with sensory loss:
These roles are not mutually exclusive and professionals working with a child play many roles, often simultaneously. Barriers to Teaching Self-Determination to Very Young Students All the participants in our study agreed that it was best to start exposing children with sensory loss to self-determination at an early age. However, like previous studies, participants shared barriers to teaching self-determination to students. Although this study focuses on teaching self-determination to elementary- and preschool-age students, the barriers mentioned are not unique to any particular age group. The barriers fall into three broad categories:
Time was not found to be a barrier in this study, although past research found it to be a barrier. Discussion Results from this study contribute to a broader body of research on effective ways to teach self-determination skills to very young students who have sensory loss. One of the most important strategies is collaboration with families and other professionals who work with the child, because working on these goals in a silo is not effective. To effectively foster self-determination requires team members to have a relationship with families and feel comfortable having honest conversations about what the family wants for their child now and in the future. Families may not be ready for these conversations or for working on self-determination goals, so it is important that professionals meet families where they are at. Participants in this study also shared barriers to teaching self-determination to very young students. Because families are such an important part of leading these self-determination efforts, participants categorized parents as potential barriers to fostering these skills. If parents do not buy into working on self-determination goals or do not follow through to reinforce these skills at home, it is hard for students to make progress. Families have a lot of competing priorities and busy schedules, so they may find it easier to make decisions for their children instead of taking the time to allow children to make their own choices. Another barrier is families’ lack of understanding of what self-determination is. Self-determination is a term that professionals and families alike often confuse with self-advocacy and self-awareness. Parents may have never heard of self-determination and may need someone on the IEP team to inform them. Past studies that examined barriers to teaching self-determination have identified the barriers of insufficient time and more urgent needs (Agran et al., 1999; Cho et al., 2011, 2012; Karvonen et al., 2004; Lohmeier et al., 2009; Thoma et al., 2002). . None of the participants mentioned those barriers as a concern; perhaps they were creating ways to infuse self-determination into the curriculum throughout the day so they did not feel it took more time. There were distinct differences between how the participants who are teachers of students who are deaf or hard of hearing thought of and taught self-determination versus how vision professionals thought of and taught self-determination. Vision professionals learn about the Expanded Core Curriculum as part of their teacher training—of which self-determination is one of its nine skills. There isn’t an equivalent for students who are deaf or hard of hearing, so most teachers of students who are deaf or hard of hearing teach students to become self-determined by focusing on self-advocacy and self-awareness. The vision professionals also described self-advocacy and self-awareness as important but they focused more on choice-making and future planning as a means for fostering self-determination. Implication for Practice Study participants mentioned communication challenges with parents and family, and a professional lack of knowledge as primary barriers to teaching self-determination skills to elementary-age students. But all professionals saw value in finding ways to start teaching these skills to very young students. Strategies for addressing these challenges include:
Most of the participants had to learn about self-determination on their own; about half of the TODs actually looked up the definition before they participated in the interviews to be sure they had a correct definition. Many of the participants sought out professional development opportunities themselves later in their careers after they learned of the benefits. Teacher preparation programs should include self-determination in their curriculum, sharing the benefits. None of the TOD participants learned about self-determination in their teacher preparation programs and wished there was an emphasis on not just self-advocacy and self-awareness but also other areas of self-determination, such as choice-making. The bottom line is that more professionals and parents need to be aware of the benefits of self-determination—how being self-determined can help a student be causal agents in their own lives, leading to better transition outcomes. Starting to teach these skills to students at a younger age can help make postsecondary transition much easier. References Agran, M., Snow, K., & Swaner, J. (1999). Teacher perceptions of self-determination: Benefits, characteristics, strategies. Education and Training in Mental Retardation and Developmental Disabilities, 293-301. Cho, H. J., Wehmeyer, M., & Kingston, N. (2011). Elementary teachers’ knowledge and use of interventions and barriers to promoting student self-determination. The Journal of Special Education, 45(3), 149-156. Cho, H. J., Wehmeyer, M. L., & Kingston, N. M. (2012). The effect of social and classroom ecological factors on promoting self-determination in elementary school. Preventing school failure: alternative education for children and youth, 56(1), 19-28. Field, S., Martin, J., Miller, R., Ward, M., & Wehmeyer, M. (1998). A Practical Guide for Teaching Self-Determination. Council for Exceptional Children, CEC Publications. Karvonen, M., Test, D. W., Wood, W. M., Browder, D., & Algozzine, B. (2004). Putting self-determination into practice. Exceptional Children, 71(1), 23-41. Lohmeier, K., Blankenship, K., & Hatlen, P. (2009). Expanded core curriculum: 12 years later. Journal of Visual Impairment & Blindness, 103(2), 103-112. Self-determination. (n.d.). Retrieved March 31, 2017, from htps://www.merriam-webster.com/dictionary/self-determination. Thoma, C. A., Nathanson, R., Baker, S. R., & Tamura, R. (2002). Self-determination: What do special educators know and where do they learn it?. Remedial and Special Education, 23(4), 242-247. Wehmeyer, M. L. (1998). Self-determination and individuals with significant disabilities: Examining meanings and misinterpretations. Journal of the Association for Persons with Severe Handicaps, 23(1), 5-16. Wilton, A. P., & MacCuspie, P. A. (2017). Self-determination. In Holbrook, M. C., McCarthy, T., & Kamei-Hannan, C. (Eds.). (2017). Foundations of education (pp. 875-913). AFB Press. Acknowledgements
This study could not have been done had it not been for the help of the teachers of students who are deaf or hard of hearing, and vision professionals who volunteered their time to be participants in this study. I would also like to thank Dr. Silvia Correa-Torrez (Professor at University of Northern Colorado) who advised on this research study. While this report draws upon the help of many people, fault for any errors or omissions rests with the authors alone. Quality Assurance Process Independent peer review is an integral part of all Lane of Inquiry research projects. Prior to publication, this document was subjected to a quality assurance process to ensure that: the problem is well formulated; the research approach is well designed and well executed; the data and assumptions are sound; the findings are useful and advance knowledge; the implications and recommendations follow logically from the findings and are explained thoroughly; the documentation is accurate, understandable, cogent, and balanced in tone; the research demonstrates understanding of related previous studies; and the research is relevant, objective, and independent. Peer review was conducted by outside research professionals.
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AuthorLanya McKittrick is the Chair of the Board of the Usher Syndrome Coalition, co-founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness. Archives
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