Self-Determination Materials Bibliography

by DB-LINK on May 1, 2011
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This is a partial list of materials on this topic available from the DB-LINK Catalog Database.  If you have additional questions, please contact us via email:

Updated 2011


Becoming Empowered Through Self-Determination Skills --Sewell, Debra. TX SENSE ABILITIES, vol. 2, #3, Spring/Summer 2008, pp.15-19. (2008) The author describes how family members and educators can foster self-determination in children and young people with visual impairments. Available on the web: becoming-empowered-through-self-determination-skills.


Collective Wisdom: An Anthology of Stories and Best Practices for Educating Students with Severe Disabilities and Deaf-Blindness Kansas State Department of Education. (2001) A collection of writings by people who have been involved in the lives of children and young adults with severe disabilities and deaf- blindness. Contributors include parents, teachers, special education directors, and a wide range of other professionals. Topics include self-determination, collaboration, assistive technology, and positive behavioral supports. Currently available for free from: Jeff Cook, Kansas Project for Children and Young Adults Who Are Deaf-Blind, Kansas State Department of Education, 120 SE 10th Ave., Topeka, KS 66612-1182, 785-296-0917 (TTY only),


College Students Who Are Deafblind: Perceptions of Adjustment and Academic Supports --Arndt, Katrina. AER JOURNAL: RESEARCH AND PRACTICE IN VISUAL IMPAIRMENT AND BLINDNESS, vol. 3, #1, Winter 2010, pp. 12-19. (2010) This descriptive qualitative interview study explored the perspectives of 11 college students who are deaf-blind in order to gain insight into their experiences. Results indicate that students have to manage both adjustments to visual impairment and academic supports as they navigate college life. Implications for service providers include being knowledgeable about deaf-blindness and supporting students self-determination skills.


Communication Strategies for Developing Self Advocacy Skills in Individuals who are Deaf Blind With or Without Additional Disabilities --Bhargava, Dolly; Gordon, Emma; Bloom, Ylana. 14th DbI World Conference on Deafblindness Conference Proceedings, September 25-30, 2007, Perth, Australia. (2007) This is text of a workshop presentation given at the 14th DbI World Conference on Deaf- Blindness. This presentation describes self advocacy; how to begin, how to develop the skills required in self advocacy and what can hinder the development of these skills.


Creating Opportunities for Tomorrow: DeafBlind Transition Camp --Kennedy, Beth; Gaus, Jill. DEAF-BLIND PERSPECTIVES, vol. 16, #2, Fall 2008, pp. 6-8. (2008) In order for DeafBlind teenagers to become self-advocates and succeed in college, they need a positive and solid foundation on which to build. To help establish this foundation, DB Central (Michigan Services for Children and Young Adults Who Are DeafBlind) has held several summer DeafBlind transition camps (DBTCs) to help college-bound students acquire the skills and knowledge they need to achieve success.In June 2008, the third DeafBlind transition camp was held at Michigan State University (MSU) in East Lansing. The camp agenda emphasized the skills and knowledge that college students require for success and independence, including social, time-management, problem-solving, self- advocacy, and self-determination skills. Available on the web:


Deaf-Blind Young Adults in Action: Legislative Advocacy and Leadership -- Parker, Amy T.; Bruce, Susan M.; Spiers, Elizabeth; Ressa, Suzanne V.; Davidson, Roseanna C. AER JOURNAL: RESEARCH AND PRACTICE IN VISUAL IMPAIRMENT AND BLINDNESS, vol. 3, #4, Fall 2010, pp. 124-131. (2010) This article describes a one-week course on leadership and advocacy in Washington, DC for six young adults with deaf-blindness. The young adults were briefed on four legislative topics: the need for Support Service Providers (SSPs); increased support for the state deaf-blind technical assistance projects; the Twenty-First Century Communications and Video Accessibility Act of 2009; and increased support for the Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC). Each selected one or two of the topics as the focus of advocacy during Congressional visits. During the course, the participants refined their communication, self- determination, and advocacy skills and participated as co-researchers examining their development as change agents. An evaluation of the program found that the participants were highly satisfied with the training they received and that the following are important features of effective advocacy training: access to information on policy issues, knowledgeable mentors who understand deaf- blindness, and opportunities to practice advocacy skills while engaging with elected officials.


Deafblind Worlds Project: Our World --Barnett, Susannah. TALKING SENSE, Vol 52, #1, Spring 2008, pp. 14-15. (2008) The aim of the Deafblind Worlds Project was to understand Deafblind people's lives and experiences. Much is known about the culture, language and history of Deaf people, but very little is known about the experiences and perceptions of Deafblind people. The Deafblind Worlds Project was a partnership between Sense and the Deaf Studies Trust. It was funded by the Big Lottery Fund and ran between October 2004 and March 2007. Further findings from the project can be obtained from or on the Deaf Studies Trust webpage at


Deafblind Worlds Project: Needing to Talk --Barnett, Susannah. TALKING SENSE, Vol 52, #1, Spring 2008, pp. 22-23. (2008) In a second article about the Deafblind Worlds Project, the author who was one of the researchers in the Project team, describes how Deafblind people were enabled to share their experiences in direct group discussions. It was funded by the Big Lottery Fund and ran between October 2004 and March 2007. Further findings from the project can be obtained from or on the Deaf Studies Trust webpage at


Empowerment: Taking Charge, Making Plans --Butler, Sarah. TALKING SENSE, Vol 53, #2, Summer 2009, pp. 20-25. (2009) This article explores a community access project undertaken to make is easier for deafblind people with learning difficulties to decide how they would like to experience their local area.


"Imagine": Relaxation and Guided Imagery with People Who Are Deaf-Blind -- Gothelf, Carole R.; Petroff, Jerry G.; Teich, Jennifer W. JOURNAL OF VISUAL IMPAIRMENT AND BLINDNESS, vol. 97, #2, February 2003, pp. 97-105. (2003) This article discusses the acquisition of self-control using relaxation and guided imagery. These methods are recommended to assist people who are deaf-blind to lead self-determined lives. Describes relaxation and guided imagery techniques and how they can be used to reduce stress and improve one's control over their life.


Informed Choice and Informed Consent in Usher Syndrome Genetic Research - An Update : Self-determination in Usher Syndrome Genetic Research --Miles, Constance. Brantford, Ontario: Canadian Deafblind and Rubella Association. 13th DbI World Conference on Deafblindness Conference Proceedings, August 5-10, 2003, Mississauga, Ontario, Canada. (2003) This is the text of a workshop presentation given at the 13th DbI World Conference on Deaf-Blindness. The paper describes the importance of self-determination as well as informed choice and consent in Usher syndrome genetic research.


Lesley's Story --McCrae, Heather. TALKING SENSE, Vol 53, #2, Summer 2009, pp. 26- 27. (2009) This article describes a 40 year old woman with congenital rubella syndrome and her life journey. It describes putting control of her life in her hands with support.


Rachel Allen's Glorious Life to 15! --Allen, Rachel Christine. TX SENSEABILITIES, vol. 5, #1, Winter 2011, pp. 2-4. (2011) A speech given by Rachel Allen, a 15 year old girl with CHARGE Syndrome, inspiring others to believe that everyone can live a full life filled with joys and adventures. Available on the web:


Research to Real Life: Innovations in Deaf-Blindness --Leslie, Gail (Ed.) Monmouth, OR: DB-LINK: National Information Clearinghouse On Children Who Are Deaf-Blind. (2001) This publication presents snapshots of eight current research projects in deaf-blindness. By focusing on the partnerships formed with parents, teachers, and consumers, the document highlights the practices that are the results of these projects. The projects consist of research in early intervention, assessment, education, inclusion, communication, technology, behavior and self-determination for students who are deaf-blind across the country. Each chapter describes a project along with key practices and findings. Contact information for the projects and researchers is included along with a list of available products. Available from DB-LINK, Teaching Research, 345 N. Monmouth Ave., Monmouth, OR 97361, (800) 438-9376, TTY: (800) 854-7013, Publisher's web site:


The Road Ahead: Transition to Adult Life for Persons with Disabilities -- Storey, Keith (Ed.); Bates, Paul (Ed.); Hunter, Dawn (Ed.) St. Augustine, FL: Training Resource Network, Inc. (2008) This book is resource for anyone involved in helping people with disabilities transition to adult life. It includes chapters on person-centered transition planning, instructional assessment, instruction in skills that enhance community inclusion, developing basic work skills and employment preferences, community functioning skills, social life, quality of life, self-determination, supported living, and postsecondary education.


Self-Determination: The Key to a Smooth Transition from School to Adult Life -- Mississippi Services for Children and Young Adults with Deaf-Blindness. Hattiesburg, MS: Focus Flyer, #1, June 2000, pp. 1-10. (2000) This flyer focuses on transition to independence and work for students with deaf-blindness. Information on transition planning, transition activities, integrating the IEP with quality transition services, using the person-centered planning activities to develop long and short term goals is included.


Self-Determination NFADB. NEWS FROM ADVOCATES FOR DEAF-BLIND, vol. 7, #2, Summer 2002, pp. 1,19. (2002) This article describes the agenda for the National Technical Assistance Consortium (NTAC) and NFADB co-sponsored parent training workshop on self-determination. The workshop was held in August 2002 in Kansas City, MO. Describes the essence behind self-determination and how it applies to people who are deaf-blind. The idea behind the workshop was to enable families who are trained in self-determination to identify where and how they can provide opportunities for increased personal control for the person who is deaf-blind. Publisher's web site:


Self Determination: A Life Long Process The Netherlands: 5th Deafblind International Conference on Deafblindness, Golden Tulip Conference Hotel, July 24-29, 2001, Leeuwenhorst Noordwijkerhout, The Netherlands. (2001) This is the agenda and presentations from the 5th Deafblind International Conference on Deafblindness, held in The Netherlands from July 24-29, 2001. The theme of the conference was self-determination. The workshops and plenary papers presented revolved around this theme and include presentations on: what is self- determination, how self-determination is a life long process, and going through life being deaf-blind. Workshop topics include how to develop self- determination in pre-school children, self-determination for deaf-blind people in eastern Europe, developing communication with deaf-blind children, and transitioning from school to adult life. Roundtable discussions covered topics such as: cochlear implantation, mental wellbeing, social inclusion, and new developments in Usher syndrome. Includes keynote address, plenary papers and information on each topic included in the conference.


Self-Determination: Supporting Successful Transition --Bremer, Christine D.; Kachgal, Mera; Schoeller, Kris. Minneapolis: National Center on Secondary Education and Training. RESEARCH TO PRACTICE BRIEF, vol. 2, #1, April 2003, pp. 1-5. (2003) This research newsletter focuses on self-determination and transition. It provides a brief explanation of what is meant by self- determination and how it is learned. Reviews recent research on self- determination in high schools and how it corresponds with positive transition outcomes. Provides tips for families and professionals to help promote self- determination in youth with disabilities. Reviews the availability of self- determination curricula for the classroom. Publisher's web site:


Self-Determination for Children and Young Adults Who Are Deaf-Blind --Morgan, Susanne; Bixler, Elizabeth; McNamara, Jamie. Monmouth, OR: National Technical Assistance Consortium for Children and Young Adults Who Are Deaf-Blind (NTAC) NTAC Briefing Paper. (2002) This paper explores how self- determination applies to individuals who are deaf-blind and how it affects families, educational programming, and service delivery. Provides information on the underlying principles of self-determination, and practices that foster self- determination including access to the environment through communication and vocational and work experiences. Information on how to infuse self- determination concepts into technical assistance services and program planning is provided as well. Additional copies of this document are available from: DB- LINK, 345 N. Monmouth Ave., Monmouth, OR 97361, PH: (800) 438-9376, TTY: (800) 854-7013, FAX: (503) 838-8150, or visit the website. Publisher's web site:


Self-determination for individuals with significant cognitive disabilities and their families --Turnbull, Ann; Turnbull, Rud. Journal of the Association for Persons with Severe Handicaps, Vol 26(1), Spr 2001. pp. 56-62. (2001) Addresses 2 issues in self-determination for people with significant cognitive disabilities and their families: (1) the profound influence of such disabilities on achieving self-determination, and (2) the influence of cultural values on one's definition of self-determination. The authors include their experience as professionals and as parents of a 33 yr old son with significant mental and emotional disabilities. To meet the challenges of developing a self-determined vision of quality of life, actualize the vision in daily routines and relationships and make quality of life adjustments over the lifespan, the authors suggest that 5 lines of research should merge to enable families and individuals with significant cognitive disabilities to meet these challenges. These are: (1) individual quality of life, (2) family quality of life, (3) positive behavioral support, (4) self-determination as the process of developing motivation and skills to make life choices and (5) support through funding of services.


Self-Determination of Young Adults With Deaf-Blindness : Preliminary Results from a Multivariate Study --Abery, Brian, Ph.D. University of Minnesota: Institute on Community Integration. Paper presented at the 5th Annual European Deaf-Blind Conference, July 25, 2001. (2001) This paper describes a study to assess the self-determination capacities by students who are deaf-blind. Examines opportunities for students to exercise leadership and personal control, areas in which leadership and control is desired, and the actual degree of control they exert over their lives. Includes extensive references and statistical data obtained from the study.


Self-Determination Synthesis Project: Final Performance Report --Wood, Wendy M.; Text, David W. Charlotte: North Carolina University. (2001) This final report discusses the activities and outcomes of the Self-Determination Synthesis Project (SDSP), a project designed to synthesize, corroborate, and communicate the professional knowledge base on the effects of self-determination and self- advocacy interventions for children and youth with disabilities. The SDSP used both quantitative and qualitative methods to identify effective practices in promoting self-determination for students with disabilities. A comprehensive literature review and meta-analysis of self-determination intervention outcomes was conducted with the extant literature. Twenty-two studies that intervened to promote one or more components of self-determination were included in the meta- analysis and a series of qualitative case studies were conducted in six school districts across the country that had a demonstrated history of effectively promoting self-determination for their students. The districts used a variety of strategies, ranging from published curricula to teacher-made lessons to person- centered planning strategies to promote self-determination. Student participation in educational and transition planning was also emphasized. Common features across sites that contributed to self-determination outcomes for students included the presence of an impetus person and multiple, changing roles of teachers and parents.


Southeast Regional Teen and Young Adult Deaf-Blind Retreat --Lace, Jenny. TX SENSEABILITIES, vol. 4, #2, Spring/Summer 2010. (2010) Several southeastern states annually collaborate to host an event for youth with deafblindness and their families. Teens participate in workshops, learning self-determination, leadership, career, and adult life planning skills, all while developing community with other young people who are deafblind. Available on the web: adult-deaf-blind-retreat.


Under the Magnifying Glass: Warning: Guardianship Under Construction -- Gilbride, Margaret. DEAFBLIND FOCUS, vol. 15, #2, Summer/Fall 2004, pp. 1-4. (2004) This article looks at the complex issue of guardianship in light of the the disability rights movement's focus on self-advocacy, self-determination and authentic interdependence. The author, an advocate, contends that it is wise to be fully informed as to what guardianship means and what its alternative are in order to determine if a better way exists to assure that the needs of the person with a disability are met and that his/her property is protected for his/her benefit. Guardianship is examined in light of person-centered planning; types of guardianship are explained; and alternatives to guardianship are described.


What I Did This Summer --Holt-Reuter, Jillana. VIBRATIONS, NEWSLETTER OF COLORADO SERVICES FOR CHILDREN WHO ARE DEAFBLIND, Fall 2002, pp. 17-18. (2002) This personal narrative was written by a parent who attended the NTAC and NFADB conference in Kansas City, MO in 2002. The conference, "Being Self-Determined: What Does it Take?", is described as well as how the information gained helped this mother to begin implementing self-determination strategies with her daughter. Describes self-determination strategies.  

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