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Main Conference Speakers:
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 Dr.
Vivienne
Riches is a Senior Research Fellow,
Centre for Developmental Disability Studies, and Clinical Senior Lecturer,
at the University of Sydney. She is also a registered psychologist.
Vivienne has extensive experience in teaching, clinical practice and
research and development, as well as service delivery evaluation in the
areas of employment, education and training programs, residential
services, and social, interpersonal and emotional programs for people with
disabilities at the local, state and federal level. Her experience
and expertise cover program and policy development, needs assessment,
curriculum development, individual program planning, and program
intervention, and both quantitative and qualitative evaluation. Author of
Standards of Work Performance and Everyday Interaction
Skills, Vivienne is also a Board member of a supported
employment program for people with disabilities and an editorial
consultant to The Australian Journal of Rehabilitation Counseling. |
AUSTRALIA |
 Diane
Richler is Executive Vice-President of the Canadian Association for
Community Living, which works to assist communities to be inclusive of
persons with have an intellectual disability.
The association is a federation of ten provincial and two
territorial associations with more than 400 local associations and over
40,000 members.
Ms. Richler was previously Director of The Roeher Institute and has
worked for over twenty-five years supporting organizations of persons with
intellectual disabilities, their families and friends to be agents for
social change. Ms. Richler has particular interest in linking
disability to broader issues of social policy, human rights,
democratization and the strengthening of civil society, both in Canada and
internationally. In
1996-97, Ms. Richler served as a policy advisor to the Minister of Human
Resources Development. |
CANADA |
 Dr.
Marcia Rioux is Vice-President of the International Association
for the Scientific Study of Intellectual Disability (since 1996) and is
internationally known for her work in relation to citizenship,
empowerment, social justice and human rights for people with disabilities.
Until recently, Marcia was President and Executive Director of the
Roeher Institute, a Canadian research and policy institute that has worked
extensively on issues of importance for people with disabilities.
She is now at the Robarts Centre for Policy Studies at York
University and on the Graduate Faculty of the School of Social Work.
Marcia has been involved in
landmark legal cases for people with an intellectual disability and her
research has addressed a broad range of public policy issues such as
community living, inclusive education, individualized funding,
deinstitutionalisation, violence and abuse, employment and income support
for people with disabilities.
Her resume includes an array of honorary and advisory positions
including Consultant and Representative for Inclusion International at the
World Health Organization meeting on WHO Disability Policy in Geneva in
1999; Official Observer for Inclusion International at the UNESCO
International Bioethics Committee as well as being on the editorial Boards
of a number of international journals including Abilities Magazine,
Disability and Society and the European Journal of Mental
Disability.
Marcia has also prepared
reports for and provided expert advice to the Canadian Human Rights
Commission and the Royal Commission on Equity in Employment and has
addressed Parliamentary committees and the World Bank. |
CANADA |
 Phillip Ripper
has
been working for the disability rights' movement for more than ten years.
Phillip is currently Executive Officer at Action for Community Living (ACL),
one of Australia's leading advocacy organisations, and run exclusively by
people with disabilities. In
his current position, Phillip oversees research, policy development,
systemic and individual advocacy for people with any ‘type’ of
disability in the areas of employment, education, community access,
accommodation and recreation. The
ACL has been leading the debate on individualized funding and
self-determination in the state of Victoria. |
AUSTRALIA |
|
Lyle Romer has worked
in the field of developmental disabilities for 27 years. His involvement
has included home, work, community and school supports for people with
developmental disabilities. In his current position he manages several
research contracts for the Division of Developmental Disabilities at the
University of Washington. |
UNITED STATES |
| Doreen Rosimos, a native of New Hampshire, has with other family members helped her older brother Jack, who has many labels attached to him, such as cerebral palsy, schizophrenia, etc. find and maintain the life that he wants to lead. She has created a unique situation in which Jack (and his family) control his individual budget. In less than 2 years, Jack was able to buy and renovate his own home. Jack has improved his health to the point that he has had no hospitalizations, while previously they averaged 3 months a year. Jack chooses who he lives with and hires any help he requires. He now has an extended family living with him, as well as friends and family help to him with his needs, while maintaining funds available to him should his desires or needs change. Most importantly, Jack is HAPPY since his life is more real and much less clinical. Doreen continues to help other individuals, who have been considered "difficult" by services and professionals, to choose their own lives. Doreen has also helped many people start and operate their own businesses and is currently working nationally to help people earn their own incomes. |
UNITED STATES |
 Rocky
Rothrock attended
Gannon University in Erie, Pennsylvania, where he majored in Business.
He sustained a severe Traumatic Brain Injury (TBI) in 1991 as a result of
a motor vehicle accident. After rehabilitation, Rocky began F.A.S.S.T., a
support group for people with TBI and their families. Rocky was the first
person with a cognitive disability to serve on the Statewide Independent
Living Board, a position he still holds. Rocky also led the effort
to get the Brain and Spinal Cord Injury Trust Fund enacted in the state of
Georgia and now sits on the Board of the Trust Fund Authority. He consults
with the Community Health Division in the implementation of the Federal
TBI act, primarily in the effort to establish support groups for minority
populations that have TBI. Rocky speaks extensively on TBI, its
aftermath, and life with a disability. |
UNITED STATES |
| Charity Rowland, Ph.D. is Associate Professor of Pediatrics at Oregon Health Sciences University and Co-Director of the Center on Self-Determination. Trained in developmental psychology, she has conducted extensive research and demonstration efforts related to language acquisition, communication and cognitive development by individuals with severe and multiple disabilities. She has written and spoken widely on alternative communication strategies. |
UNITED STATES |
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Kristin
Rytter
is in the final stages of earning her PhD in developmental psychology form
the University of Washington. She hopes to work as a clinician with
children. For the past 4 years Kristin has worked with a circle of support
to develop the agency structures and strategies that will allow her the
freedom to pursue her life’s dreams, which are focused on helping
children and families. |
UNITED STATES |
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CANADA |
 N. Anthony "Tony" Sampson
lives and works in Waldorf, Maryland, USA. He has served on the
Developmental Disabilities Council in Maryland for nearly three years.
He and others organized Advocates Making a Difference, a self advocacy
group in Charles County, Maryland. Tony embodies the struggle for
independence and control. He is a teacher to those supporting people
with disabilities and will continue to challenge the system. |
UNITED STATES |
 Marisa
Scala is
a Research Associate with the Center for Medicare Education, a technical
resource center funded by the Robert Wood Johnson Foundation and housed at
the American Association of Homes and Services for the Aging in Washington,
DC.
She has authored several publications in the areas of consumer
direction of long-term care services for older adults and consumer
education related to long-term care.
Her research interests include: consumer education about health and
long-term care, consumer direction, community-based long-term care, and
personnel issues in long-term care.
She received a Master of Gerontological Studies degree from Miami
University and a B.A. in Sociology and Gerontology from the College of the
Holy Cross. |
UNITED STATES |
 Jo
Anne and her daughter Christina
Schell live in Seattle. Christina is a
high school graduate, active in Special Olympics, downhill skiing, track
and T-Ball, and she also enjoys reading, swimming, oldies' music and
"hanging" with her friends. Christina volunteers on a
weekly basis at the Children's Hospital as a messenger and is currently
employed at the N.O.A.A. in the child care site as a kitchen support staff
member. She also spends time on a daily basis in the infant and
toddler classrooms. Jo Anne has over 30 years of experience as
a teacher, having worked with toddlers through 8th graders.
She is currently working on her Master's in Education Degree in Creative
Arts through Lesley College in Boston, MA. Jo Anne is an active
volunteer but " . . . loves being mostly with her family and helping
make things and people connect and happen". |
UNITED STATES |
 Arlene Schouten is a
parent whose daughter Natalie was one of the first people with a
disability in British Columbia to use the support of a broker to negotiate
a comprehensive and fully portable individual budget (in 1987).
Although her daughter died three years ago, Arlene remains a committed
advocate for individualized funding and actively supports people with
disabilities and families to secure this type of funding for
their sons and daughters. |
CANADA |
| Sharon Shreet directs the Social Security Administration component that is responsible for developing supports and incentives for disabled beneficiaries who wish to return to work and for promoting public understanding of those policies. She began her career with the Social Security Administration in 1976 as a claims representative. Since then, she has served in a number of policy, public affairs, and management positions within the agency. She and her staff are currently working to improve and expand employment opportunities for people with disabilities who receive Social Security and Supplemental Security Income benefits. | UNITED STATES |
 Ken
Simons
has been doing research in human services for longer than he now cares to
remember. For the last decade and half his work has focused exclusively on
services and supports for people with intellectual disabilities, and for
the last ten years Ken has been based at the Norah Fry Research Centre,
part of Bristol University (England), where he is a Senior Research
Fellow. Ken's has long standing interest in a range of issues,
including housing and support, self-advocacy and what now gets called
self-determination. He has written extensively about supported living in
the UK, and is currently involved in a evaluation of a direct
payments scheme in partnership with Swindon People First. |
ENGLAND |
 Darcy
Smith, a dynamic woman dedicated to operationalizing the
freedom of individuals through the creation of income, began her career in
the disability field with Monadnock Family Services, the local mental
health center in Keene, New Hampshire. Her latest challenge is
Income Links, LLC, which she developed in collaboration with Doreen
Rosimos (another conference speaker). The fundamental belief of
Family Links, LLC, is that is is not always about jobs, but about INCOME.
Darcy's belief in developing micro enterprises to meet the varying needs
of individuals is the basis for her new endeavour. |
UNITED STATES |
 Phil
Smith, Ed.D., is the Director of the Vermont Self-Determination
Project. A writer, educator, and consultant, he recently completed a
qualitative research project exploring choice, control, and power in the
lives of self-advocates. |
UNITED STATES |
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CANADA |
 Tim Stainton
is a former service broker in British Columbia, Canada who has researched and written
numerous articles on service brokerage and individualized funding. He is also a
lecturer in Social Work at the University of Swansea in Wales. |
WALES |
 Roger
Stancliffe, Ph.D. has over 23 years experience in the
developmental disability field as a psychologist, advocate, service
manager, consultant, board member of non-government organizations, member
of the NSW Guardianship Board, and researcher. Roger is a senior
research fellow at the Center for Developmental Disability Studies in
Sydney. In the mid 1990s he spent two and a half years as a research
fellow at the Research and Training Center on Community Living at the
University of Minnesota and still works for this center part-time from
Australia via e-mail. His research interests include choice,
self-determination, community living and de-institutionalization. |
AUSTRALIA
|
 Simon
Stevens has been managing his own personal
assistances packages for the last 8 years. He runs his own company as a
disability and accessibility specialist, providing consultancy, training
and research services. Simon is also very active in many aspects of the
disability field in the United Kingdom, and recently starred in a national
newspaper advertisement for the UK Government. |
ENGLAND |
 Michelle Sures-Rath has
been working with people with disabilities for 20 years. She currently
works as a transition specialist in Burlington Vermont with students at a
local high school, ensuring smooth transition from school to adult
services and successful employment. She has worked as the Vermont
Self-Determination Project Administrator, as a service broker in Vancouver
British Columbia, and as a coordinator of developmental services for the
Vermont provider agencies. She received her doctorate in Rehabilitation
Counseling from Syracuse University, focusing on the area of natural
supports in employment for people with disabilities. |
UNITED STATES |
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UNITED STATES |
 Susan
Sygall is the Co-founder and Executive Director of Mobility
International USA, which promotes international educational exchange,
leadership training and travel opportunities for people with disabilities,
and she is the co-author of several books in this field. She is an
international consultant and disability rights activist who has traveled
and presented workshops throughout the world. Ms. Sygall is the 1995
recipient of the President's Award from the President's Committee on
Employment of People with Disabilities. |
UNITED STATES |
 Ryo
Takahashi
is
a Gerontologist who is the Director of the Zion Social Welfare Research
Center. Ryo also works at the Tokyo Metropolitan Institute of Gerontology
and Japan Well-Aging Association. He teaches Social Welfare, Social
Policy, Counseling, and Human Ethics at the Adachi East High School,
Fukushima Care and Welfare College, and Shirakawa Advanced School of
Nursing of Japan Agricultural Cooperative Association. Ryo currently
serves on the steering committee of Aging Special Interest Research
Group of the International Association for the Scientific Study of
Intellectual Disabilities. He has also been involved in establishing an
ombudsperson's network in Japan, especially for persons with intellectual
disabilities and their families.
|
JAPAN |
| Joseph Theriault is a front-line home support worker and a member of Interdependent Consulting, which specializes in assisting people with disabilities to manage their own supports. He is one of the initiators of the Choices in Supports for Independent Living (CSIL) program through the Ministry of Health in British Columbia, which provides direct funding for attendant care to people who require home support. Along with Paul Gauthier, he has taught courses and developed curriculum to assist people with disabilities to plan and manage their own supports. He has been active in the union movement and politically as an advocate for enshrining in law the right to home support and individualized funding. | CANADA |
 Caroline
"Ann" Thomas is a self-advocate whose job involves traveling
and speaking to help others advocate for themselves. Ann is the Vice
President for People First in Ohio and sits and votes on many
committees. Ann is very proud to be on the Robert Wood Johnson's
Self-Determination Grant Steering Committee for the State of Ohio. She
is involved in the Arc of Ohio with the Choices Grant that will assist
people now living in developmental centers in Ohio to be able to
experience community involvement, and learn how to make choices. Ann is
co-chairperson for the People First/Self-Determination Conference to be
held in Columbus in December 2000 which is truly consumer driven! |
UNITED STATES |
| Estina
Thompson is an Assistant Professor in the Department of Health
Education at the University of Maryland.
Her research interests are in aging and health policy with a focus
on equity in long–term care and mental health.
Currently she is comparing consumer–directed care policies in the
U.S. and Germany. |
UNITED STATES |
 Jan
Thurlow is the mother of Clare, a young woman who was one of the first
people with a developmental disability to obtain direct
payments. Jan travels and speaks in various countries on issues
associated with direct payments & the important role that parents
play in the lives of their sons and daughters who have a disability. |
ENGLAND |
| Jane Tilly joined the Urban Institute in 1999 and works principally on long-term care issues. At present, Ms. Tilly is conducting eight case studies of state consumer-directed long-term care programs. She is also involved in a HCFA-sponsored evaluation of Medicaid home and community-based services waivers. A third major project involves studying the health systems of Massachusetts and Texas as part of the Assessing the New Federalism project. |
UNITED STATES |
 David
Towell's family includes his disabled older
sister, Pat, for whom he is a life-long advocate. He serves on the
Management Committees of a housing and support provider and also a citizen
advocacy organisation in London. Professionally, David has worked at
leading UK Centres concerned with the application of social sciences to
social policy, and now directs the social inclusion program at King's
College, London's Institute for Applied Health and Social Policy. He has
worked in ten other countries, including Australia, Canada and the former
Czechoslovakia. His books include An Ordinary Life In Practice
and Enabling Community Integration (both published by the
King's Fund). He is also an advisor to the Government on its new national
disability policies. |
ENGLAND |
 Jean
E. Tuller
is the Special Projects Director for the National Program Office on Self-
Determination, and is based at the Health Care Financing Administration in
Baltimore, Maryland. In this capacity, she is responsible for addressing
policy, technical assistance, program design and operational issues
pertaining to the implementation of the Americans with Disabilities Act,
the Olmstead decision requiring the transition of residents of nursing
homes and other institutions to the community, and the conversion to a
system embracing the principles of self-determination. She previously
served as Project Director for the Maryland Self- Determination
Initiative. |
UNITED STATES |
| JT Turnbull, a 32-year old Kansan, has been experiencing supported living and supported work since he was expelled from the adult service system at the age of 19. In his work life he is a clerical aide at The University of Kansas; and in his social life he is a musician and dancer. His parents, Rud and Ann Turnbull, co-direct the Beach Center on Families and Disability at the University of Kansas (where JT is employed). They have a long history of advocacy for the inclusion and self-determination of individuals with significant cognitive disabilities, as well as for services and supports to enhance family quality of life. Richard Gaeta and Anne Guthrie have been JT’s housemates for almost 3 years. Anne works on a sibling research project at the University of Kansas Medical Center. This is particularly meaningful to her since she had a brother with mental retardation (who passed away several years ago). Richard is a writer, artist, and cook. He and JT do all sorts of activities together including community service, yoga, crafts, cooking, and hosting parties. |
UNITED STATES |
Brian
Salisbury is an Instructor in the Community Support Worker
Program at Kwantlen
University College in British Columbia and consultant on service brokerage &
individualized funding. He is also one of the two co-chairs of the conference
program planning committee.
Judith Snow, MA is an
internationally recognized author, lecturer, and organizer for the rights
of all people to participate fully as citizens. She is one of the first
persons ever to receive supports through an individualized budget. Judith
has been featured in books, videos, and television programs - as a
fascinating person, a social philosopher and an international disability
rights advocate. She is the co-author of the book, "The Inclusion
Papers", and is the author of "What's Really Worth Doing and How
to Do it- A Book for People Who Love Someone Labeled Disabled (Possibly
Yourself)". Jack Pearpoint's book: "From Behind the Piano"
(Inclusion Press) details Judith's struggle and the creation of her
support circle, the Joshua Committee, which successfully fought
bureaucracy to win Judith's right to live fully with dignity in her
community.
Sue
Swenson is the Commissioner of the Administration on