Advocacy Bibliography

by DB-LINK on Mar 1, 2013
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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 6/2013


AADB Legislative Training --Spiers, Elizabeth. DEAF-BLIND AMERICAN, vol. 45, #4, October-December 2006, pp. 21-24. (2006) This article describes thirty-five deaf- blind people attending the first ever AADB legislative training. It was opportunity to meet their state legislators and educate them about their own needs and the needs of the deaf-blind community in their home areas.


Before the Federal Communications Commission Washington, D.C. 20554 In the Matter of PN Comments - Specialized CPE Distribution Program CG Docket No. 10- 210: Comments in Response to Public Notice --American Association of the Deaf- Blind Telecommunications for the Deaf and Hard of Hearing National Association of the Deaf Deaf and Hard of Hearing Consumer Advocacy Network Association of Late-Deafened Adults Hearing Loss Association of America California Coalition of Agencies Serving Deaf and Hard of Hearing Deaf Seniors of America Georgia Association of the Deaf-Blind Ohio Association of the Deaf-Blind Deaf-Blind Explorers. (2010) This is a formal response to an FCC request for comments on the methods of distributing technology equipment for deaf-blind people. The equipment is authorized as part of the 21st Century Communications and Video Accessibility Act of 2010, which included a $10 million allocated for technology equipment specifically for deaf-blind people. This response describes the difficulties that deaf-blind people have accessing technology (e.g., lack of equipment designed specifically for people with both hearing and vision losses, expense), the need to use a functional definition of deaf-blindness (the American Association of the Deaf-Blind is provided), and a list of the types of technologies used by deaf-blind people.


Believe in My Child with Special Needs!: Helping Children Achieve Their Potential in School --Falvey, Mary A. Baltimore: Paul H. Brookes Publishing Co. (2005) This book was written by a parent of a child with disabilities to help other parents understand their child's legal rights; pursue an inclusive education for their child, from preschool to high school and beyond; collaborate respectfully with educators on their child's IEP; promote their child's access to the general curriculum and encourage educators to use appropriate modifications and assessment strategies; support their child as he or she develops friendships; develop transition plans to help their child achieve their goals after high school. Includes chapters on federal laws and court rulings and age-related services and supports.


Comments to OSEP Forum --Collins, Michael T. --National Coalition on Deafblindness. Providence, RI: (2001) Comments and recommendations from the National Coalition on Deafblindness to OSEP and Congress regarding deafblindness and the reauthorization of IDEA


Community Involvement Works! Tennessee Organization of the Deaf-Blind, Inc. -- Forbes, John. The DEAF-BLIND AMERICAN, vol. 49, #1, Summer 2010, pp. 13-16. (2010) This article is part of a special issue of the Deaf-Blind American focusing on state organizations for people who are deaf-blind. The Tennessee Organization of the Deaf-Blind, Inc. (TODB), a consumer-governed organization, had its origin during the 1980's. This article describes how it was formed, how it has changed and expanded its focus over the years. Today, TODB is serving the deaf-blind community by providing activities to bring together individuals for fun, socialization, and education. For example two popular activities are the annual sailing event and camp. TODB holds statewide meetings in the spring and the fall each year.


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.


Experience of a Lifetime --Morales, Crystal. DEAF-BLIND PERSPECTIVES, vol.17, #1, Fall 2009, pp.6-7. (2009) Six young adults with deafblindness including the author, participate in an advocacy training program called Deaf-Blind Youth in Action. They learned how to present information to senators, congressional representatives, and their staffs. It is the first deaf-blind group since Helen Keller to meet the president of United States. The author describes her experience in the White House and her meeting with the president of United States. Available on the web:


Informing Empowering and Keeping Parents Involved: Part I: The Beginning: How Parents Move Forward and Make Choices After Diagnosis --Agoratus, Lauren. EXCEPTIONAL PARENT MAGAZINE, vol. 32, #6, June 2002, pp. 105-109. (2002) This is the first in a series of articles to address issues that parents and families face as they strive to assist their children with disabilities. This article discusses how to move forward and make choices after diagnosis. Provides information on navigating the education system and provides a resource list of organizations that assist families with a child with a disability.


Informing Empowering and Keeping Parents Involved: Part II: The Decision and The Battle --Agoratus, Lauren. EXCEPTIONAL PARENT MAGAZINE, vol. 32, #7, July 2002, pp. 87-91. (2002) This is the second a series of articles to address issues that parents and families face as they strive to assist their children with disabilities. This article provides information from parents who overcame the numerous obstacles that confronted them as they advocated for their children to get the services they need. Provides stories of struggles and successes parents experienced along the way. A list of resources of organizations available to assist parents is provided as well.


Learning Stuff We Don't Know --Conway, Megan A., Ph.D. REVIEW OF DISABILITY STUDIES: AN INTERNATIONAL JOURNAL, vol. 7, #3&4, pp. 3-4, 2011. (2011) The editor of this journal is deaf-blind.  She had recently organized a panel of experts for her online introductory Disability and Diversity Studies course and made some assumptions about the accommodations necessary for another deaf-blind panelist as well as a panelist that was Deaf. She addresses her assumptions and the accommodations she arranged after feedback from the panelists and admits she tells all her students that the key to changing our views about disability and diversity is to admit that what we think we know may not be the truth but it can be hard when she thought she knew everything and found out otherwise.


Letter to Parents of Deafblind Children --White, Wendy. Eugene, OR: Teaching Research, Eugene. OREGON DEAFBLIND PROJECT, Fall 2001, pp. 3-4. (2001) This article is written by a parent of a deafblind child. She provides advice to other parents and discusses important ways to help children with deafblindness. She discusses parent education, the importance of having patience, communication skills, environment, advocacy, and expectations. Good information for any parent of a child with deafblindness.


Parents of Kids with Disabilities Change their Lives with Pioneering Leadership Program : Miami-Area Parents Become Effective Advocates for their Own Children and Others EP MAGAZINE, March 2007, pp. 54-55. (2007) Two-page article that describes the Parent Leadership Development (PLD) Project, a pioneering program spearheaded by the Parent to Parent of Miami and funded by The Children's Trust. The 11 parents participating in this ongoing program have become effective, confident advocates for both their own kids, whose disabilities included autism, Down syndrome, and CHARGE syndrome, and for all children with disabilities. Their lives have changed for the better. With their newfound confidence, parents took on new roles including: (1) Regional Director for the National Deaf/Blind Association; (2) Mentor for parents of children with disabilities; (3) Trainer for pediatric residents at the University of Miami Medical School; and (4) Board member for ACT Disability Resource Network. Parents also report they learned how to: (1) Proceed with more confidence; (2) Slow down; (3) Speak better in public; (4) Listen more; (5) Deal with people better; (6) Prioritize; (7) Turn up the heat at meetings to get something done; and (8) Be reflective and plan actions better.


Person Centered Plans Can Help Students Build Self-Advocacy Skills --Rhodes, Larry. PEPNET PERSPECTIVES, Spring 2011, pp. 4-5. (2011) This article highlights three tools often used in person-centered planning (PCP). The particular tools share a common set of values and beliefs, which make them effective for empowering and increasing communication skills of students who are deaf or hard of hearing. The article includes a section on selecting the right tool for the individual student. There is also a section on resources on person-centered planning.


Position Statement: Meeting with Tom Hehir and Judy Heumann --National Coalition on Deafblindness. Watertown, MA: (1997) Position statement from the National Coalition on Deafblindness prepared for a meeting with Tom Hehir and Judy Heumann held July 16, 1997. outlines major issues including technical assistance, NTAC, DB-LINK, and national census.


The Power of Self Advocates, Families and Friends in the Legislative System -- Bellah, Edgenie. TX SENSE ABILITIES, vol. 3, #3, Spring 2009, pp. 9-10. (2009) The author discusses legislation that benefits individuals with visual impairments, including deafblindness, passed during the recent 81st Legislative Session in Texas, as well as a recent presidential visit in honor of Hellen Keller Deafblind Awareness Week. Available on the web:


President's Report : A Vision and a Voice 10 Years of Advocacy --Stanger, Sheri. NEWS FROM ADVOCATES FOR DEAF-BLIND, vol. 8, #3, Spring-Summer 2004, pp. 1,6. (2003) This article, written by the President of NFADB, highlights the organization. Describes its inception, development over the past ten years, and current and future goals.


Protect and Thrive --Kiekopf, Steve. TALKING SENSE, Vol 53, #1, Spring 2007, pp. 18-21. (2007) Deafblind people, especially those with congenital deafblindness, can be vulnerable to abuse. Why is this and how can deafblind people be protected? The author, Policy and Quality Officer, explains how Sense addresses this sensitive issue.


Rights Through Relationships: Advocacy and Congenitally Deafblind People -- Foster, Angie Lee. WORKSHOP, vol. 24, #7, 1999, pp.1-3. Proceedings of the 12th Deafblind International World Conference, July 20-25, 1999, Lisbon, Portugal. (1999) This speaker talks about advocacy and deafblind people. She addresses three specific questions: 1) What is advocacy?, 2) What do Advocates do?, and 3) What does Sense do to promote and develop advocacy for deafblind people?.


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.


Self-Determination Importance Scale: Student Edition --Abery, Brian; Ryan, Michael; Docken, Kristin. University of Minnesota. (1998) This is a tool to use to evaluate self-determination in young adults with deafblindness. The scale evaluates personal control over one's life. It looks at one's control over their life at home, with friends, at school, over their healthcare needs, and while at work.


Special Education: A Parent's Guide for a Child's Success --Bailey, Michael T. Baltimore: Publish America. (2006) Written specifically for parents advocating for children in special education. This book offers practical tips, checklists and strategies for navigating special education. It includes information on early intervention for preschool children as well as issues for school-age children. Additional chapters discuss IDEA and special education law, advocacy and problem solving, inclusion, conflict resolution, and the future of special education.


Unique Nature of Deafblindness and Resulting Fundamential Considerations -- Vinterhoj, Kurt. International Association for Education of Deaf/Blind People, 11th World Conference, Cordoba, Argentina July 13, 1995. (1995) This conference paper describes the common responsibility of all nations to create equal opportunities for deafblind people to participate in society. It discusses the United Nations' Standard Rules in depth and calls for organizations of deafblind persons, with references to the rules, sustain the dialogue with the potical authorities with support from family members and staff.

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