Advancing Knowledge and Training on Self-Determination

PROJECT PURPOSES:

This core area of the UIC NRTC advances knowledge and training on self-determination for people with psychiatric disabilities.  Participatory action research values and methods guide project goals and activities.  All work is accomplished by multidisciplinary workgroups comprised of people with psychiatric disabilities, family members of these individuals, service providers, advocates, researchers, educators, and Center staff.  The main project goals are to:

SELF-DETERMINATION TOOLS AND RESOURCES

    Express Yourself! Assessing Self-Determination in your Life.
Express Yourself! is a user-friendly self-determination tool for people interested in knowing how much choice and control they have in their lives. Users can pinpoint life areas where they'd like to have more control and decision-making power (such as money or relationships), and then learn how to get started by using action-planning and web-based resources. Areas covered in this self-assessment include finances, housing, transportation, employment, community integration, medical treatment, and mental health care. It is especially useful when paired with This is Your Life! - the Center's person centered-planning guide (see below). Download the self-assessment [PDF - 70K, 11 pages] or contact the Center's resource coordinator for a copy.

    This is Your Life! Creating Your Self-Directed Life Plan. This easy-to-use workbook helps people with psychiatric disabilities think about, choose, plan for, and act on a life goal, with supports of their own choosing. The workbook has as its foundation both person-centered planning and the "stages of change" model. It guides people in mental health recovery to see that life change is a process, with natural twists and turns along the way. Download the workbook [PDF 315K, 58 pages], or contact the Center's resource coordinator for a copy.

    Promoting Self-Determination for Individuals with Psychiatric Disabilities through Self-Directed Services: A Look at Federal, State and Public Systems as Sources of Cash-Outs and Other Fiscal Expansion Opportunities. This paper examines promising interconnections between the concepts of recovery, self-determination, and self-directed care. It reviews five principles of self-determination, noting how freedom, authority, support, responsibility, and confirmation operate to enhance individual choice and enable people with psychiatric disabilities to build meaningful lives. The paper then explores the major systems in the U.S. that can serve as sources of cash-out funding, as well as those that would be most affected by widespread adoption of self-directed care, along with some of the barriers to change that are present in these systems. The systems discussed include Medicaid, Community Mental Heath Block Grants, State general revenue and legislative systems, public housing, fiscal agents and intermediaries, federal-State vocational rehabilitation, workforce development, public disability income support, the Ticket to Work, the banking system and Individual Development Accounts, and the system of technology. The paper concludes with a series of recommendations for next steps in adopting this mental health care financing mechanism for self-determination, including the important role of peer-to-peer services in operating these programs. Download the document [PDF 282K].

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    Raising Difficult Issues With Your Service Provider. This booklet provides "conversation starters" for people to use when initiating an empowering dialogue with their mental health service providers. Ways to raise issues in ten important life areas cover education, employment, history of abuse and trauma, intimate relationships, control over one's own money, maintaining privacy, promoting sexual freedom, honoring choices about psychiatric medications, and showing respect for service recipients.
Download the booklet [PDF 58K], or contact the Center's resource coordinator for one free copy.

    Seeking Supported Employment: What You Need to Know. This easy-to-read booklet guides people with psychiatric disabilities through the process of identifying an evidence-based supported employment program. Using a question and answer checklist format, along with an integrated scoring system, individuals can choose the program that is right for them, and know whether the program provides services that research has shown lead to career success. Download the booklet [PDF 113K], or contact the Center's resource coordinator for one free copy.

    * Self-Determination for People with Psychiatric Disabilities:  An Annotated Bibliography of Resources. This annotated bibliography contains references to numerous articles, monographs, unpublished reports, and books regarding self-determination, self-advocacy, and self-sufficiency for people with psychiatric disabilities and other kinds of disabilities.  It also is available in manual form.

    * Self-Determination Framework for People with Psychiatric Disabilities. This Framework serves as a foundation for identifying values and approaches that can foster self-determination for people with psychiatric disabilities.  It highlights what self-determination means, how it can be achieved, and how it can reflect the needs of people with psychiatric disabilities from a variety of backgrounds. 

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    Self-Determination among Mental Health Consumers/Survivors:  Using Lessons from the Past to Guide the Future.  This publication covers the history of self-determination for people with psychiatric disabilities, theories and models of self-determination, and next steps for the field. Download the paper [PDF 74K], or contact the Center's resource coordinator.

    National Self-Determination Workshop Series. This Series provides ongoing training and technical assistance about self-determination in order to raise awareness, increase knowledge, and enhance skills of workshop participants.

    * Self-Determination and Technology Annotated Bibliography of Resources. This document summarizes numerous articles, books, and reports related to technology and self-determination, disability, and accessibility/availability. It also is available in manual form.

    Self-Determination Short Technology Survey.  This Survey evaluates computer and Internet access, use, and barriers to use among individuals with psychiatric disabilities.  It can be used to assess whether access issues are preventing use of information and communication technologies.  Copies can be obtained by contacting the Center's resource coordinator.

    Webcast:  Using the Internet to Promote Self-Determination & Emotional Well-Being.  This Webcast addresses how the Internet can be used to create online communities and to seek, find, and maintain employment.  It also addresses how to determine the validity and reliability of information provided on the Internet, and provides personal stories about how the Internet can foster self-determination.

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PROJECT ACTIVITIES AND PRODUCTS REGARDING SELF-DETERMINATION:

The UIC NRTC’s National Self-Determination and Psychiatric Disability Invitational Conference: Conference Papers. This monograph is the first-ever collection of papers devoted exclusively to self-determination and mental health. It is a compilation of the briefing papers presented at the UIC NRTC 2003 National Self-Determination and Psychiatric Disability Conference. The first track papers highlight the authors’ personal experiences on the road to self-determination. The second track papers address the ways in which the current infrastructure and financing of formal service systems are not conducive to self-determination and self-direction for service participants. The third track papers focus on societal barriers to self-determination for people with psychiatric disabilities, as well as strategies to address these issues through political and social action. All papers summarize current knowledge about self-determination at specific track levels, and suggest action steps for the future. These papers are now available for download.

Self-Determination Framework for People with Psychiatric Disabilities.  Throughout this project year, UIC NRTC staff and the project’s Self-Determination Knowledge Development Workgroup (77% of whom are people with disabilities and/or personal experience in social service systems) developed the conceptual framework of self-determination for people with psychiatric disabilities.  Work began with listserv discussions about self-determination theories and current practices, which yielded a tri-level definition of self-determination (addressing individual, service system, and global self-determination).  This definition served as the basis for the framework, which was drafted and discussed on a series of workgroup teleconferences.  Discussion included what self-determination means to people with and without disabilities, cultural and gender-specific considerations, how self-determination is fostered and impeded in the community and in service systems, and how self-determination can be achieved by individuals and supported by families, providers, advocates, and others. A second draft of the framework was prepared in a Delphi survey format (allowing members a confidential way to provide comments). Based on these results, a third version of the framework was prepared and finalized. The Self-Determination Framework for People with Psychiatric Disabilities is available for download.

Self-Determination among Mental Health Consumers/Survivors:  Using Lessons from the Past to Guide the Future.  During this project period, the UIC NRTC Director and Managing Director were invited by the Director of the OSHU Center on Self-Determination (Portland, OR) to prepare and submit a manuscript for publication.  This paper covers the history of self-determination for people with psychiatric disabilities, theories and models of self-determination, and next steps for the field.  It is published in the Journal of Disability Policy Studies in September, 2002.  Copies can be obtained by downloading the paper [PDF 74K], or contacting the Center's resource coordinator.

UIC NRTC National Self-Determination Workshop Series. This Series provides ongoing training and technical assistance about self-determination in order to raise awareness, increase knowledge, and enhance skills of workshop participants.  To date, the Series has reached over 200 people in-person and several hundred more via the Internet with segments archived for viewing.

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CURRENT WORK REGARDING SELF-DETERMINATION:

Staff, workgroup members, and consultants continue to develop the UIC NRTC Self-Determination Workshop Series. Work also continues on the UIC NRTC Self-Determination Product Series. This Series provides people with psychiatric disabilities and their supporters/providers with tools and resources for increasing self-determination at the individual, systems, and societal levels. Check out the latest tools released as part of this Series.

NEXT STEPS IN SELF-DETERMINATION CORE AREA:

In the coming year, UIC NRTC staff, the Self-Determination Knowledge Development Workgroup, and participants in the 2003 National Self-Determination Conference will be creating a set of management tools to help people with psychiatric disabilities, as well as their families, providers, advocates and others, to rate levels of self-determination found at individual, service system, and community levels. These “Self-Determination Report Cards” will be designed to help people with psychiatric disabilities, families, and advocates to move themselves, their clients, and their service systems towards greater levels of self-determination and thriving.

The UIC NRTC staff and Workgroup members also will be working on planning and executing the 2003 National Self-Determination Conference.

PROJECT ACTIVITIES AND PRODUCTS REGARDING SELF-DETERMINATION AND TECHNOLOGY: 

During the 2002 project year, UIC NRTC staff and the Self-Determination and Technology Workgroup began work to develop the Self-Determination Short Technology Survey.  The Short Survey contains eleven items designed to evaluate computer and Internet access, use, and barriers to use.  This Survey is to be included in every UIC NRTC project interview protocol to capture information from diverse audiences about technology access, use, and barriers. It also will be administered to audience members at the ongoing Self-Determination Workshop Series sessions and other Center-related conference presentations.  Contact Genevieve Fitzgibbon at fitzgibb@psych.uic.edu for more information.

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CURRENT WORK REGARDING SELF-DETERMINATION AND TECHNOLOGY:

Currently, UIC NRTC staff and the Self-Determination and Technology Workgroup are preparing to host a Webcast entitled, “Using the Internet to Promote Self-Determination & Emotional Well-Being,” to be broadcast on October 22, 2002, at 3pm EST. This Webcast will feature: a discussion of how the Internet helps people with limited resources to participate in online communities and in advocacy efforts; practical guidance and information on using the Internet and software resources to seek, find, and secure a job; and a panel discussion regarding how to determine the validity and reliability of Web-based resources and how the Internet can foster self-determination.  Featured speakers will include:  Ed Schwartz, Howard Dansky, Sylvia Caras, Frances Priester, and Judith Cook. 

NEXT STEPS IN SELF-DETERMATION AND TECHNOLOGY CORE AREA:

In the coming year, UIC NRTC staff and Self-Determination and Technology Workgroup members will begin work on development of the Self-Determination Technology Long Survey. The Long Survey is to be administered on the Web and will provide the opportunity for a more in-depth look at information and communication technology (ICT) utilization and barriers, and how ICT can foster and impede self-determination among people with psychiatric disabilities.

PROJECT STAFF:

Principal Investigators:  Jessica A. Jonikas, MA and Judith A. Cook, Ph.D.

Co-Investigators:  Genevieve Fitzgibbon, BA and Drew Batteiger, BA

SELF-DETERMINATION KNOWLEDGE DEVELOPMENT WORKGROUP MEMBERS:

Larry Belcher, Judi Chamberlin, Kathy Furlong-Norman, Barbara Granger, Ramiro Guevara, Tamar Heller, Chris Hendrickson, Leah Holmes-Bonilla, David Oaks, Laurie Powers, Joseph Rogers, Andrea Schmook, and Suzanne Vogel-Scibilia

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SELF-DETERMINATION AND TECHNOLOGY WORKGROUP MEMBERS:

Sylvia Caras, Howard Dansky, Dan Phillips, Frances Preister

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