SAMHSA- Self-Direction Education Project

March 16th, 2005 1:00 Pm (EST) Webcast

Title:  Self-Direction and Its Relationship to Mental Health.  Principles and Tools of Self-Direction.  What we have learned and the data that supports self-direction in mental health. 



-       Welcome by Paolo Del Vecchio, SAMHSA

-       Overview of how the web cast will work- Rick Offner, Vice President DB Consulting Group, Inc


-       Keynote- Tom Nerney-Center for Self-Determination, The History of Self-Determination in Human Service systems:  The Five Core Principles of Self-Determination and How They Relate to Self-Direction in Mental Health


-       Judi Chamberlin- Director of Education and Training

-       National Empowerment Center, Inc

-       Peer-to-Peer Services and the Importance of Self-Direction as It Relates to Mental Health Systems


-       Jean Tuller, Executive Director-OTAC- Data and Efforts Supporting Self-Direction


-       Open for questions


-       Rick Offner Brief message announcing the dates of additional web casts and sign off.

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Presenter Bios

THOMAS NERNEY, Executive Director
Center for Self-Determination
401 East Stadium Boulevard, Ann Arbor, MI 48104
Voice: 734-213-5220
Web Site:

Director of The Center for Self-Determination This is a national effort to work with individuals with Disabilities, family members and professionals to create a training and technical assistance capacity to implement the principles of self-determination nationwide.

Former Co-Director of the University of New Hampshire Co-Director of the Robert Wood Johnson Foundation’s program entitled “Self-Determination for Persons with Developmental Disabilities.” This was a $7 million national program assisting states in transforming their service delivery systems into community support systems that facilitate persons with disabilities having control over the supports they need to live active and meaningful lives. This role consisted of managing national grant financing and technical assistance and training to states, regions, counties and persons with disabilities and families.

Additional accomplishments include:
- Principal Investigator for the Robert Wood Johnson Foundation project to determine changes in cost and quality of life for persons with severe disabilities when they gain control of the resources
- Principal Investigator for a three-year study of funding, labeling, and placement decisions in special education in Connecticut.
- Director of Evaluation and Supported Employment Services at Monadnock Developmental Services in Keene, New Hampshire.
- Writing, lectures, and involvement in research on public policy issues regarding persons with disabilities. Specific concerns included issues of cost reimbursement, including state and Medicaid funding, special education funding and practices, human rights and innovative practices in the field.
- Involved in current historical research in the early 20th century eugenics movement and the history of segregation for persons with disabilities.
- Led the reform effort in Washington, DC aimed at redirecting Medicaid funds from institutional to community and family settings.
- Was instrumental in creating and supporting amendments to the Rehabilitation Act regarding work incentives for those with significant disabilities, drafting the 1984 amendments to the Child Abuse Act, directing efforts to increase protections for human subjects and initiate general prohibitions against physically painful aversives for those with self-injurious behavior.
- Served as an Expert Consultant to the Assistant Secretary, U.S Department of Education, Office of Special Education and Rehabilitative Services, Madeleine Will.
- Served as staff to the U. S. Senate Special Committee on Aging
- Served as Expert Consultant to the U.S. Civil Rights Commission on medical discrimination against Children with Disabilities.
- Mr. Nerney is an accomplished writer and has multiple papers published on the subject of public policy and disability.

Download PDF of Thomas Nerney's bio

67 Magnolia Street, Arlington, MA 02474
Phone/Fax: 781 777 1154

Judi Chamberlin is a psychiatric survivor and an activist since 1971 in the survivor/consumer/ex-patient movement. She helped to found the Ruby Rogers Advocacy and Drop-In Center in 1985, which is run by and for people who have received psychiatric services.

Judi is the author of On Our Own: Patient-Controlled Alternatives to the Mental Health System, originally published in 1978, and later republished in Britain, Italy, and Japan. She has also written numerous articles about the movement, self-help, and patients' rights.

Judi is affiliated with the Center for Psychiatric Rehabilitation at Boston University, where she works on projects concerning recovery, curriculum development, and on the use of personal assistance services for people with psychiatric disabilities. She is a co-founder of the National Empowerment Center, in Lawrence, MA, a federally funded technical assistance center which serves the consumer/survivor/ex-patient movement, where she is the Director of Education and Training.

Judi is a board member of the National Association for Rights Protection and Advocacy (NARPA), the American Association of People with Disabilities (AAPD), the Center for Public Representation, and Mental Disability Rights International (MDRI). She served as co-chair of the World Network of Users and Survivors of Psychiatry (WNUSP) from 2001 to 2004. In 2004, she was appointed to the Panel of Experts which advises the United Nations Special Rapporteur on Disability. She also serves on the Massachusetts Mental Health State Planning Council (co-chair), and the Governor’s Special Advisory Commission on Disability Policy, among many other boards and committees. She is a member of the editorial board of Psychiatric Rehabilitation Journal. She is listed in Who’s Who in America, and is profiled in Extraordinary People with Disabilities, a book for young people.

Judi has spoken at conferences and meetings around the world, with appearances in Canada, England, Scotland, Ireland, Iceland, Sweden, Denmark, Norway, Finland, Holland, Portugal, Italy, Austria, Germany, Slovenia, Hungary, Australia, New Zealand, Japan and Hong Kong.

In 1992, Judi received the Distinguished Service Award of the President of the United States from the President's Committee on Employment of People with Disabilities, and the David J. Vail National Advocacy Award from the Mental Health Association of Minnesota. In 1995, she was the recipient of the N. Neal Pike Prize for Services to People with Disabilities, from the Boston University School of Law.

Download PDF of Judi Chamberlin's bio

Jean Tuller, Executive Director
Oregon Technical Assistance Corporation
3886 Beverly Avenue NE, Suite I-21
Salem, Oregon 97305-1373
503-364-9943, ext. 12

Jean Tuller is the executive director of the Oregon Technical Assistance Corporation (OTAC). OTAC is a nonprofit organization that promotes independence for persons with disabilities through training, technical assistance and organizational development. It will use BJBC grant funds to support changes in eight provider organizations that seek to improve working relationships between direct care workers and supervisors, and between workers and the people and families they serve. The project will also promote career advancement for direct care workers, and strive for greater diversity of the long-term care workforce so that cultural differences are taken into account in "person-centered care.

Additional efforts that Ms. Tuller oversees within OTAC include:

- The Empowerment Initiatives Brokerage is a collaborative project of OTAC and Empowerment Initiatives, a consumer/survivor governed organization. Funded by Oregon’s Real Choice System Change Grant: Advancing Consumer Choice through Enhanced Infrastructure, the 18-month project is committed to self directed services and person centered planning through utilization of brokerage and fiscal agent functions.
- Better Jobs/Better Care Oregon Works! Building a Workforce for the 21st Century, a coalition of 19 state, provider and community organizations is creating a workforce to meet the long-term care needs of frail older adults in Oregon. The nursing and direct care workforce is not growing to keep pace with the expanding demand for care. Furthermore, the work environment is not conducive to attracting and retaining qualified direct care providers. Oregon has been selected as one of five sites for the Robert Wood Johnson/Atlantic Philanthropies Better Jobs Better Care demonstration grant. This initiative seeks to strengthen the direct care workforce through policy and workplace practice change. These changes will result in improved services to elders receiving long-term care.
- Expert Alliance Committed to Community Life for People with Disabilities. The HSRI-OTAC Alliance provides a broad range of training systems and technical assistance aimed at supporting people with disabilities to participate fully in community life.
- Management Consulting delivering administrative support to organizations experiencing financial, managerial or programmatic challenges

Ms. Tuller served as the Special Programs Director for the National Program Office on Self-Determination at the University of New Hampshire. She is based in the Center for Medicaid and State Operations at CMS. Her policy analysis responsibilities included self-determination and the impact of the American with Disabilities Act, especially as it has been interpreted in the Olmstead v. L.C. Supreme Court decision.

Ms. Tuller previously served as Project Director for the Maryland Self-Determination Initiative, a broad-based systems change effort.

Download PDF of Jean Tuller's bio

Self Direction Education Project’s Guiding Principles

Substance Abuse and Mental Health Services Administration (SAMHSA)

Self-determination is based on a set of universal human principles.

These principles are:

• Freedom to decide how to live one’s life in a manner that maximizes the capability to reach one’s goals and dreams,
• Authority to control the dollars that are available to purchase services and supports that enhance freedom to achieve goals,
• Support needed to make informed decisions about services and supports needed to achieve the goals,
• Responsibility for using dollars wisely, decisions that are made regarding goals and how to achieve them, and the people who provide support,
• Participation of people with mental illnesses in the design and implementation of programs supporting people to reach goals.

Self-direction is a term derived from self-determination philosophy that operationalizes the principles of self-determination around four general categories:

• Person-centered planning: A planning process directed by the individual, intended to identify the strengths, capacities, preferences, needs and desired outcomes,
• Individual budgeting: The total funding amount for service and support under the control of the service recipient and a process of allocating the budget dollars across the services and supports necessary to achieve the recovery goals as determined in the person-centered plan.
• Self-direct supports: A system of functions that assist consumers to develop, implement and manage services and supports including:
o Information on self-direction principles and practice,
o Conflict-free assistance with person-centered planning; developing and managing the individuals budget; identifying and securing necessary good and services; recruiting and managing support workers; creating emergency back- up plans; training participants and support workers; and understanding billing and documentation,
o Performance of payroll responsibilities, purchasing of goods and services, tracking and monitoring of expenses, and identifying over and under expenditures,
• Quality management: A process that builds quality into the design of the program, including processes for discovering problems and opportunities for improvement, remediation of problems and program improvement.

As a result of SAMHSA’s meetings held in April of 2003 and March of 2004, the Federal Substance Abuse and Mental Health Services Administration (SAMHSA) developed the following recommendations for the Self-Direction Education Project:

• A paradigm shift is needed at system, collaborative and individual levels,
• Focused Technical Assistance and Training is needed for States, providers, consumers and other system stakeholders,
• Need to share models including those from other disability systems as well as practices, tools, legislation and regulations,
• Learn from and leverage existing state/local self-determination models,
• Bedrock principles should include self-directed recovery, real choice in service delivery, reliance on peer and community-based approaches, and focus on healing the whole person rather than treating a disease,
• Individual and cooperative market-based mechanisms should be explored, such as individual direction of service dollars, buying cooperatives, etc.,
• A focus should be on peer/community-based approaches to service delivery,
• Tailored approaches are needed to meet the needs of the mental health and substance abuse systems and the needs of different populations,
• Greater participation of consumers and their families, inclusion persons of color, is needed in policy development, program and research design, and service delivery and evaluation,
• Shifts in Federal, State and local funding mechanisms are required to support self-determination, and greater collaboration with Federal and State agencies and other organizations to accomplish this,
• Train people in mental health recovery in skills necessary to engage in shared decision-making and self-directed mental health care,
• Implementation should occur in conjunction with Federal and State agencies and other organizations,
• Develop educational programs to empower consumers and family members to lead self-directed lives,
• Expanded training and capacity building for consumers, their families and providers are needed, including increased numbers of certified peer specialists.

In addition to the above, the Final Report of the President’s New Freedom Commission on Mental Health, “Achieving the Promise: Transforming Mental Health Care in America,” recommended expansion of models of “self-directed services and supports for people with mental illnesses” (p.40).

Download PDF of Self Direction Education Project’s Guiding Principles
Resource Links

Discussion Questions on Self-Direction as it Relates to Mental Health

As part of the SAMHSA -Self-Direction Education Project, there will be three web castings presented: March 16th, April 6th and May 25th, 2005 at 1:00PM Eastern Time. We encourage viewers to hold discussions after the web cast on how to promote self-direction as it relates to mental health in you home states and territories.

Suggested topics of discussion following the web cast could include:

1. After reviewing the principles of self-direction, how do you see these being used in your home state and localities?

2. The web cast spoke about models of self-direction. Are there models of self-direction or self-determination currently being used in your state?

If so, identify what is working within those models. What isn’t working?

3. Are there Peer-to-Peer services in your area?

4. What are the barriers that are preventing self-direction in mental health care in your area?

Once a barrier has been identified, discuss possible strategies to overcome these issues.

5. An example of a quality assurance tool was shared during this web cast, how can such tools be implemented to deliver/ monitor quality and promote self-direction in your area?

Download PDF of Discussion Questions on Self-Direction as it Relates to Mental Health