Board Membership and Leadership for Self-Advocates

Ann Turnbull, Past President of AAIDD/AAMR, asked the Education Division to provide some resources on supporting self-advocates to be on the board of a non-profit organization. Below are a few of the available resources to support advocacy and leadership, either written specifically for self-advocates, or for a person who would support a self-advocate to participate in board meetings.

•  Not Another Board Meeting! by Susanne Goebel. This leadership guide is composed of three parts: 1) a guide for persons with disabilities consisting of a list of self-advocacy issues and support needs, 2) a guide for the support person, and 3) a guide for other members of decision-making groups. The guides are intended to be used as tools to help people communicate more openly, and to help people respect each other and see each other’s potential. Included are suggestions on how to use the guide, workbook questions, check lists of things to remember when serving on a board, a definition section for commonly used terms, and success stories. Available from Oregon Developmental Disabilities Council, 540 24^th Place NE, Salem, Oregon 97301-4517. (503) 945-9941.

• Speak Up! Guide, by Rebekah L. Pennell. A CD with Word documents and Power Point presentation. A workbook and learning guide are designed to help adults in transition with intellectual disabilities survey their own needs, likes, and dislikes. Contains sections on leisure activities, strengths, skills, and future planning; communication and assertiveness; problem solving; and rules and rights; self-advocacy and determination; organizing self-advocacy groups and community involvement. The materials also include role-p-laying modules. Call or write: Shifting the Power, CB #7255, University of North Carolina, Chapel Hill, NC 27599-7255, (919) 966-5171.

• Boards of The Future! A Participatory Guide for Building Inclusive Board Membership, by Carol Burdett. The manual is a training guide for educating potential board members and current members in building inclusive decision-making groups. The manual discusses board etiquette, roles, procedures, definitions of operating terms, responsibilities, and contains an evaluation and assessment toll to determine success. Write or call: Vermont Developmental Disabilities Council, 103 South Main Street, Waterbury, VT 05671-0206. (802) 241-2612. 

• Self Advocacy for Self Advocates: A Leadership Guide, by Jeff Saucier, Alan Kurtz, Debbie Gilmer and Members of SPEAKING UP FOR US, Maine’s Self Advocacy Network. The guide is designed to assist self-advocacy leaders to teach self-advocates and others about self-advocacy. The words come directly from people with mental retardation who have participated in self-advocacy leadership education in Maine. Available from The Center for Community Inclusion, University of Maine, 5717 Corbett Hall, Room 114, Orono, ME 04469-5717. (207) 581-1084. Voice and TTY. Toll Free (800) 203-6957 Voice and TTY.

Special educators and other professionals in the disability field have begun to recognize that educational expectations for persons with developmental or intellectual disabilities have often been set too low, resulting in limited educational opportunities for these individuals. One result of this shift in thinking is that schools have made a major shift to a standards-based educational system that mandates that all students have access to the information and experiences society views as important for its citizens, that is, the general curriculum. Students with disabilities are increasingly being included in general education classrooms where teachers are providing them with individualized modifications and accommodations so that they can access the same information and educational activities as their typically developing peers. There is also recognition that individuals with disabilities are lifelong learners. Adults with disabilities are capable of acquiring new skills and knowledge across the lifespan, and their education doesn't need to end at age 18 or 22. This recognition has led to increased pportunitites for adults with developmental and intellectual disabilities to continue their education, either through formal postsecondary programs or through more informal community education classes. This section of our web page provides the stories of some remarkable individuals who exemplify the meaning of the term "lifelong learner."

                                            Michelle’s Story

  Michelle, a young woman with developmental disabilities, became involved in a literacy program more than four years ago. This program, offered by ARCA, a community services agency in Albuquerque, NM, offers literacy instruction to adults who have had difficulty learning literacy skills in traditional educational settings or who may never have been given the opportunity to develop literacy skills. Communicating had been a key issue and obstacle for Michelle when she was involved the ACES Day Activities program, another program for adults with developmental disabilities offered by ARCA. While she would express herself, she had difficulty getting her message across to her audience. During that period, her vocabulary was limited to three to fours words which she could sign. This posed problems for Michelle when she would try to tell others about new topics, such as about her new outfit, or that she would be going to her mother’s house for Christmas. All too often, she found her message was not being understood. This left her unsatisfied and frustrated. These frustrations sometimes resulted in outbursts, often creating additional communication problems. This pattern led to extended periods when Michelle could not be productive or happy at work. Becoming involved in ARCA's literacy program gave Michelle an opportunitity to learn new communication skills and to develop her literacy skills.