Speaker 4

Main Conference Speakers: M-P
Page

Jackie Maniago is the mother of Norman, a young man who has been living in his home community after spending many years in Woodlands School, formerly a large institution for people with mental disabilities in British Columbia. Jackie acts as an advocate for other families who have sons and daughters with disabilities, and has been actively fighting for individualized funding for almost a quarter of a century. She is a long-time board member for the Community Living Society, the organization that she and other families started in 1977 to assist people to return from Woodlands to their communities.	CANADA

Rea Maglajlic is a social worker and Project Manager for Tempus funded Interdisciplinary Centres for Community Mental Health Studies in Sarajevo and Banja Luka, Bosnia and Herzegovina. Her interest and work so far revolves around finding ways to meaningfully involve people who use services in teaching, research and practice planning, organisation and provision.	Bosnia and Herzegovina

Joe Marrone is employed at the Institute for Community Inclusion at Children's Hospital in Boston, MA, where he provides training, technical assistance and program consultation nationally and internationally in 48 U.S. states, Canada, and Europe. He has lectured and published extensively on employment, psychiatric rehabilitation, program management, quality assurance, and empowerment.	UNITED STATES

David Martin has been working in the Canadian disability rights movement since 1983 as Provincial Coordinator for the Manitoba League of Persons with Disabilities. In this position, he has been active in the development of many government policies and programs which support people with disabilities. David was a key member of a government committee which created the Self-Managed Attendant Care Option to the Manitoba Home Care Program. He has personally benefited from self-managed attendant services since 1991.	CANADA

melanie Maxwell completed high school in 1998 and currently lives with her parents on a small hobby farm on Vancouver Island in British Columbia. Melanie uses alternate augmentative communication, namely signed English, finger spelling, talking computers and body language. From a very early age, Melanie has had a passion for acting and writing and is frequently recruited to be a "spokesperson" for promoting, understanding and valuing human diversity. In 1996 she wrote and acted in a short video entitled "Please Don't Call Me Nonverbal" which was featured at an International Conference on Alternate Augmentative Communication in Vancouver, Canada. In 1999, her one-act play, "Giving Up and Moving On", won a runner up prize at a Vancouver Island High School competition. The judges said "it deals with communication issues rarely expressed." Melanie, who currently meets some of her personal support needs through individualized funding, plans to develop her skills in acting, modeling, creative writing, marketing, editing and directing videos and films.	CANADA

Val McCarthy has been a committed parent championing the rights of people with developmental disabilities for over twenty years. She recently returned to her native Northern Ireland where she continues to speak out on behalf of people with learning difficulties and the value of citizenship for all. In 1999, as part of this long standing commitment, Val successfully established the first Microboard in Northern Ireland for her daughter.	Northern Ireland

Sherry McDonald has been an involved and valued advocate on behalf of people with developmental disabilities in her northern community in British Columbia for many years. As part of her vision, Sherry, with her daughter Holly, established the first Microboard in a small, rural, community.	CANADA

Holly McDonald is a self-advocate that has been a trail blazer in many areas of her community. Holly, along with her family and friends, established the first rural Microboard in B.C. As a result of that experience, Holly has many valuable insights to share in this process.	CANADA

Patricia McGill Smith is the Executive Director of the National Parent Network on Disabilities, an organization dedicated to serving families and individuals with disabilities. She is a nationally and internationally recognized expert in the field of disability. Ms. Smith served as the Acting Assistant and Deputy Assistant Secretary in the Office of Special Education and Rehabilitation Services, in the United States Department of Education. In addition, she was the former Deputy Director of the National Information Center on Children and Youth with Disabilities, the first paid parent coordinator for the Pilot Parent Program in Nebraska and a Parent Activity Consultant for the Meyer Children’s Rehabilitation Center at the University of Nebraska Medical Center in Omaha. Ms. Smith has seven adult children, the youngest of whom has multiple disabilities, and seven grandchildren, one of whom is an adopted grandson with Down syndrome.	UNITED STATES

James Meadours is a self-advocate and is employed by the ARC of Baton Rouge, coordinating and promoting self-advocacy throughout Louisiana. He is an experienced trainer and presenter and has been involved in state and national level self-advocacy efforts. He served as President of People First of Oklahoma (1993) and on the Oklahoma Developmental Disabilities Council (1995). He was elected Treasurer and Regional Representative for Self-Advocates Becoming Empowered (SABE), a national association. Since 1996, he serves SABE as national Co-Chair. Most recently, he was elected to serve on the National Board of Directors for TASH.	UNITED STATES

Constance Miller is a long time advocate of human rights and accessible health care who has solved her own health problems and helped thousands of others who share the same predicament. When a Dalkon Shield caused her illness and injury, she became a leading US expert on its effects on women’s health. Her work on behalf of Shield-injured women has been featured in national magazines and she has assisted thousands of women to receive compensation for their injuries. A 1982 car accident left Constance with a “closed-head” brain injury. While there was no visible wound, she experienced pain, memory loss disorientation, visual, sleep and mood disorders. Most physicians told people with such symptoms they were imagining them. Upon receiving this diagnosis from her doctor, she uncovered the secrets of the changes she recognized in herself and applied what she learned from her brain injury research and her activism to selecting her doctors and lawyers. This led to an effective, client-centered rehabilitation program and a gratifying resolution for her injury claim. Constance has put everything she’s learned into a self-help guide called *From The Ashes.* She also created and runs *Head Injury Hotline* to advise people on the syndrome, on good care providers, on legal options, and on social and career services available to them. She also spends a great deal of time educating government officials, agency heads, health care providers and attorneys about closed-head injuries.	UNITED STATES

Chas Moseley is the co-Director of the Robert Wood Johnson Foundation's National Program Office on Self-Determination. In this role, Chas manages grants and provides technical assistance to states and individuals, and people with disabilities, on self-directed supports and alternatives to managed care. Previously he was Director of the Vermont Division of Developmental Services where he led that state's efforts to restructure the service delivery system to incorporate principles of self-directed services.	United States

Tia Nelis is president of Self-Advocates Becoming Empowered (SABE). She is also a nationally recognized speaker and consultant on various issues relating to the developmental disability field, including self-advocacy & inclusive communities. Tia is a member of the core organizing group for the first international conference on self-determination & individualized funding.	UNITED STATES

Tom Nerney is Co-Director of the RWJF's National Program Office on Self-Determination for Persons with Developmental Disabilities. A former Kennedy Fellow in Public Policy, Tom has also been an independent consultant/lecturer on human service reform and authored numerous publications on disability issues.	UNITED STATES

David Oaks has been a psychiatric survivor activist for more than two decades. He is now co-coordinator of Support Coalition International, an alliance of more than 75 groups in 11 countries defending human rights of psychiatric survivors, and promoting humane, empowering alternatives. David is editor of Dendron News, an award winning newspaper by psychiatric survivors that reaches 20,000 readers internationally.	UNITED STATES

Liz Obermayer is a leader in the self-advocacy movement. She currently serves on the Executive Board of TASH and was formerly active in her local self-advocacy group in New Jersey, served on the Board of New Jersey TASH, and worked with a state-wide group working to close institutions. On the national level, Liz was Vice President of the national organization, Self-Advocates Becoming Empowered (SABE) from 1993 to 1996. In August of 1998, Liz received the Elizabeth Monroe Boggs Award for Leadership.	UNITED STATES

John O'Brien learns about building more just and inclusive communities from people with disabilities, their families, and their allies. He uses what he learns to advise people with disabilities and their families, advocacy groups, service providers, and governments and to spread the news among people interested in change by writing and through workshops. He works in partnership with Connie Lyle O'Brien and a group of friends from 12 countries. He is affiliated with the Center on Human Policy (US), The King's College Centre for Community Development (EU). The National Development Team for Services to People with Learning Difficulties (UK), and the Centre for Integrated Education and Community (Canada).	UNITED STATES

Becky Ogle, a native of Tennessee, was named Executive Director of the Presidential Task Force on the Employment of Adults with Disabilities on June 26, 1998. Prior to her appointment to the Presidential Task Force, Ms. Ogle held a number of positions advocating for the health care, employment, and full societal inclusion of people with disabilities. Ms. Ogle's involvement with government began in 1990 when she served as Director of Governmental Affairs and Advocacy for the Spina Bifida Association of America. Ms. Ogle has also held a number of disability outreach positions in the 1992 and 1996 Clinton/Gore campaigns and inaugural planning committees, including Director of Disability Outreach in the Office of Public Liaison for the 1996 Clinton/Gore General Election Committee. Ms. Ogle has served as Director of Project AccessAbility for the National Association for Medical Equipment Services and has led several legislative and public education campaigns related to the important issues the Task Force is addressing, including health care, accessibility, and assistive technology.	UNITED STATES

Trevor Parmenter began his teacher career in 1953, following his training at Armidale Teachers' College. In 1974 he joined the foundation special education staff at Macquarie University as a Senior Tutor where he quickly established a Unit for Rehabilitation Studies which pioneered new employment models for people with disabilities and associated staff training. The Unit, renamed the Unit for Community Integration Studies, extends its work into the area of supported living programs. While at Macquarie, Trevor supervised a large number of research students. In 1990 his work was recognized by his appointment as Professorial Fellow in Rehabilitation Studies. In addition to research and teaching activities, Trevor has been active in national and international professional organizations including eight years as Editor-in-Chief of The Australia and New Zealand Journal of Developmental Disability, President of the International Association for the Scientific Study of Intellectual Disabilities (IASSID) (1996-2000), and a member of the editorial boards of several international journals. Trevor has also maintained close contact with the disability field, for example, serving for four years as a member of the Disability Council of NSW. His primary goal, in his third career change, is to assist the Centre for Developmental Disability Studies to become the foremost Research and Training Centre in Developmental Disability Studies in Australia, for the betterment of the life quality of people with a disability.	AUSTRALIA

Keith Pennock has been involved in personal advocacy, social change and the development of community based services for people with disabilities for the past thirty years. Highlights of that involvement include working with individuals with disabilities, their family members and other key stakeholders in the closure of five major institutions located in Canada and the U.S.A.	CANADA

Linda Perry has spent the majority of her career developing supports that encourage meaningful citizenship for everyone. During the last eleven years Linda has focused her attention on the development of microboards in B.C., with additional work in the US and more recently, the United Kingdom. Linda also works as a contract Instructor in the Community Support Worker Program at Kwantlen University College in British Columbia.	CANADA

Susan Powell is the Coordinator of the Community Support Worker Program at Kwantlen University College in British Columbia. In her 20 year career in the disability field she has worked with integrating children into their neighborhood school and teaching teachers and support staff about inclusion. She is currently completing her Ph.D. in Human Services Education.	CANADA

Laurie Powers is Co-Director of the Center on Self-Determination of the Oregon Institute on Disability and Development at the Oregon Health Sciences University (OHSU). Laurie’s work focuses on identifying and putting into practice opportunities for people with diverse disabilities to express self-determination and for systems to support them. She does work in self-determination systems change, leadership development, personal assistance services, abuse against women with disabilities, and transition from school to adult life, Laurie is a founding member of the Alliance for Self-Determination, a cross-disability network of leaders focused on promoting self-determination.	United States

Patrice Pratt is the Director of Staff Development, Administration and Finance for the 60,000 member BC Government and Service Employees' Union (BCGEU). She is also the mother of a 21 year old daughter with Williams Syndrome. Patrice was elected to various offices with the Manitoba Government Employees' Union and was subsequently hired as an Employee Relations Officer. She began working for the BCGEU in 1976. She has served on the BC Medical Services Foundation and BC Hydro Board of Directors, and as the President for the Canadian Association of Williams Syndrome. She presently sits on the Board of Directors for the Beverage Container Management Board, the Center for Labour and Management Studies and is the Board Vice-Chair for the United Way of the Lower Mainland. Patrice is on the Executive Council of the BC Federation of Labour and serves of various Federation committees.	CANADA

Terry Pratt has, since beginning her federal career with the Social Security Administration in 1978, been devoted to working with programs that serve the USA's most vulnerable population. Terry began her work with the Health Care Financing Administration (HCFA) in 1989 and is currently the Director of the Division of Integrated Health Systems within the Disabled and Elderly Health Program Group in the Center for Medicaid and State Operations. In addition to providing technical assistance and support to a diverse range of HCFA customers, she also works on the development of innovative health care delivery systems for the elderly and the disabled populations which includes freedom of choice waivers known as the 1915(b) program, the integration of the freedom of choice (1915(b)) and home and community based service (1915(c)) waiver programs, 1115 demonstration projects and the Program for All Inclusive Care for the Elderly (PACE).	UNITED STATES