Inclusion & Membership on Decision-Making Bodies

• Accommodations within Boards and Committees (2003) by Cheryl Spear, Esther Kabuga, and Bonnie Shoultz seeks to demystify the process of providing accommodations within boardrooms for people with disabilities. (19 pages).
• Promising Practices in Community Development for Board Inclusion: NYS Developmental Disabilities Planning Council’s Promoting Leadership Opportunities Demonstration Project (2002) by Cheryl Spear and Esther Kabuga discusses strategies and challenges in promoting inclusion on boards and committees for adults with developmental disabilities. (88 pages).

Individualized Funding

• Paying Customers Are Not Enough: The Dynamics of Individualized Funding (2001) by John O'Brien is a paper that explores individualized funding in relation to promotion of innovation within complex adaptive systems. (16 pages)

Institution Closure

• Policy Research Brief: Status of Institutional Closure Efforts in 2005 (2005) edited by Steve Taylor, Bonnie Shoultz, Pam Walker, and Sheryl Larson examines and summarizes the research and policy issues that state policymakers may face as they consider whether to increase, reduce, or close institutions in their own states. This Policy Research Brief was published by the Institute on Community Integration at the University of Minnesota in cooperation with the Center on Human Policy.
• Closing Brandon State School: A Vermont Story (1999) by Bonnie Shoultz, Pam Walker, Kathy Hulgin, Bob Bogdan, Steve Taylor, and Charles Moseley is a report examining the complexities of the closure of an institution, Brandon Training School, in Vermont. (53 pages)
• "I Can See No Downside to the Closure of SDC": A Documentary History of the Closure of Syracuse Developmental Center 1854-1998 (1999) compiled by Mair Hall, Perri Harris, and Lori Lewin, and edited by Steven J. Taylor, this is a documentary history of the events leading up to the closure of Syracuse Developmental Center, which was founded in 1854 as the second public institution for people with mental retardation in North America. The package includes essays, reflections, and newspaper clippings. Although this compilation of materials relates specifically to the closure of the Syracuse institution, some general lessons about institutional closure are discussed. (95 pages)
• A Chance to be Made Whole: People First Members Being Friends to Tear Down Institution Walls (1997) complied by John O'Brien is a summary of a meeting of People First of Tennessee members and advisors and presents, in their own words, what people have learned about reaching out and being friends to people who still live in institutions, and about supporting them as they move out into the community. Their hope is that other self-advocacy groups can learn from their experiences on institution closure. (27 pages)
• Feature Issue on Institution Closures (Winter 1995/96) edited by Mary F. Hayden, K. Charlie Lakin, and Steve Taylor contains national information as well as a variety of articles on closing institutions written from the perspectives of self-advocates, professionals, parents, researchers, and policy makers. This bulletin was published through the Impact series of the Institute on Community Integration at the University of Minnesota in cooperation with the Center on Human Policy.
• Making a Move: Advice From People First Members About Helping People Move Out of Institutions and Nursing Home (1990) by Connie Lyle O'Brien and John O'Brien shares the perspective of about 40 People First members on how People First members can help people from institutions and nursing homes. (7 pages)

Internet Resources

• Fact Sheet: Summary of Internet Terms and Resources (1999) by Rachael Zubal and Mair Hall is written specifically for people with disabilities and summarizes Internet terms in basic, easy-to-understand ways, and includes a brief list of Internet resources and tools. (2 pages) Free. To download this fact sheet in different formats, please see the Fact Sheets section of our web site.

Managed Care

• Information Package on Managed Care and Long-Term Supports for People with Developmental Disabilities (1997) edited by Steve Taylor includes resources and materials on "managed care" for people with disabilities. The focus of this package is on long-term supports for people with developmental disabilities. The package contains a position statement on managed care, articles containing background information, and cautionary pieces about the potential dangers in managed care as well as a list of additional organizations to contact for further information. (105 pages)

Multiculturalism and Disability

• Feature Issue on Supporting Diversity (Summer 1996) edited by Betty Horton, Marijo McBride and Bonnie Shoultz explores ways in which services are and could be supporting people from diverse groups. It also highlights a number of individuals who tell their own stories. This bulletin was published through the Impact series of the Institute on Community Integration at the University of Minnesota in cooperation with the Center on Human Policy.
• Multiculturalism and Disability: A Collection of Resources (1993) by Susan O'Connor includes an overview article which offers a discussion on how disability should be included in the multicultural dialogue and an annotated bibliography of readings, organizations and resources dealing with multicultural issues. (70 pages)
• Policy Bulletin on Disability and Family Policy presents a multicultural approach for working with families, focusing on class, gender, and cultural dimensions, with recommendations for policy makers.

• Policy Research Brief: Do We Really Mean Families for All Children? Permanency Planning for Children with Developmental Disabilities (2000) by Nancy Rosenau addresses supporting all children in families through permanency planning. Includes discussion of permanency planning policy, barriers, implementation, and recommendations. This Policy Research Brief was published by the Institute on Community Integration at the University of Minnesota in cooperation with the Center on Human Policy.
• Fact Sheet: What is "Permanency"? (2000) by Nancy Rosenau describes the importance of permanency for children and discusses strategies to support and implement it. (2 pages) Free. To download this fact sheet in different formats, please see the Fact Sheets section of our web site.
• Permanency Planning in Michigan: From Philosophy to Reality (1994) by Bonnie Shoultz, Susan O'Connor, Kathy Hulgin, and Paul Newman is a study and policy analysis of Michigan's permanency planning efforts, including successes and challenges, for children with developmental disabilities and mental health needs. The report is based on interviews with parents, state and local staff members, and administrators. (67 pages)
• Permanency Planning for Children with Developmental Disabilities in Pennsylvania: The Lessons of Project STAR (1992) by Steven J. Taylor, Julie Ann Racino, Pam Walker, Zana Marie Lutfiyya and Bonnie Shoultz is a policy analysis focusing on an agency that emphasizes permanency planning, including adoption, for children with developmental disabilities. (68 pages)
• A Child's Birthright: To Live in a Family (1990) edited by Nancy Rosenau leads the reader through a vicarious tour of Macomb-Oakland Regional Center's approach to and services for children with developmental disabilities and their families, with an emphasis on permanency for every child. (51 pages)
• Permanency Planning for Children and Youth: Out-of-Home Placement Decisions (Exceptional Children, 55(6), 541-549, copyright 1989 by the Council for Exceptional Children) by Steven J. Taylor and K. Charlie Lakin advocates the extension of the basic protections of "permanency planning" to all children and youth, including those with severe handicaps. Reprinted with permission. (9 pages) For a copy of this journal article, contact the Center on Human Policy.

Person-Centered Planning

• Getting More of Life: Improving the Timeliness of Person-Centred Approaches (2004) by John O'Brien and David Towell is the summary of the third of three workshops focusing on building capacity in local UK communities in order to offer to more people the opportunities that arise from person-centered planning. (13 pages).
• Person Centred Planning In It’s Strategic Context: Towards a Framework for Reflection-in-Action (2003) by John O’Brien and David Towell summarizes a U.K. focus group on person-centred planning following the publication of Valuing People, a White Paper issued by the U.K. Government calling for significant change in policy and practice and which recognizes the important role for person-centred planning. (13 pages).
• Increasing the Chances for Deeper Change Through Person-Centered Planning (2002) by Beth Mount, John O'Brien, & Connie Lyle O'Brien is an inventory of 12 resources to increase the chances for change through person-centered planning. (7 pages)
• The Origins of Person-Centered Planning: A Community of Practice Perspective (2000) by Connie Lyle O'Brien and John O'Brien discusses the origins and development of person-centered planning. (27 pages)
• The Politics of Person-Centered Planning (1999) by John O'Brien and Connie Lyle O'Brien describes the role of person-centered planning in relation to personal and organizational politics. (5 pages)
• Great Questions and The Art of Portraiture (1999) by John O'Brien offers ideas that help lead to deeper thinking about a person's identity, contributions, and connections to other people, and discusses the role of person-centered planning in relation to this. (6 pages).
• Person Centered Planned Has Arrived... Or Has It? (1997) by Connie Lyle O'Brien, John O'Brien, and Beth Mount is a reprint of an article (Mental Retardation, 35(6), 480-483) that describes the way one approach to person centered planning developed, and discusses issues that have arisen as it has become widely used. (4 pages) For a copy of this journal article, contact the Center on Human Policy.
• Finding a Way to Everyday Lives: The Contribution of Person Centered Planning(1993) by John O'Brien and Herbert Lovett represents the insights that emerged from a Pennsylvania gathering of people experienced in various approaches to person-centered planning and administrators interested in learning more about it. (19 pages)

Personal Assistance Services

Shifting from Empowered Agencies to Empowered People: Neighbours, Inc. (2002) by Pam Walker and Rebecca Cory describes an agency in New Jersey that supports people with severe disabilities to direct personal assistance services. (21 pages).
• Evaluation of the Self-Directed Personal Services Program Operated Through Enable (1996) by Pam Walker, Steve Taylor, Julia Searl, Bonnie Shoultz, Kathy Hulgin, Perri Harris, and Mary Handley is an evaluation report of the Self-Directed Personal Services program run by Enable, in Syracuse, New York. The program, which includes people with a wide range of disabilities, includes some aspects of consumer control. At the same time, systemic constraints to control are discussed. (24 pages)
• A Checklist for Evaluating Personal Assistance Services (1993) by Connie Lyle O'Brien and John O'Brien provides a way of evaluating the effectiveness of policies and/or programs providing personal assistance services by looking at dimensions such as availability, comprehensiveness and participant control. (10 pages)
• A Tune Beyond Us, Yet Ourselves: Power Sharing Between People with Substantial Disabilities and Their Assistants (1996) by John O'Brien and Connie Lyle O'Brien concerns creating relationships and supports that offer people the assistance they require in ways that increase their effective control of their lives. (14 pages)
• Assistance with Integrity: The Search for Accountability and the Lives of People with Developmental Disabilities (1993) by John O'Brien and Connie Lyle O'Brien is a discussion piece, intended to stimulate controversy and dispute, about support for people who rely on service providers for 24-hour assistance. It addresses the field's concerns about such issues as safety, quality, and the potential for abuse, and calls for major reorganization of the current system of service provision. (50 pages)

Perspectives of People with Disabilities

• Opening the Doors of Opportunity for the Year 2000 and Beyond (2000) by Michael J. Kennedy is a reprint of an article (Mental Retardation, 38(4), 373-374) that describes how self-determination is critical to ensuring quality lives in the community. (2 pages). For a copy of this journal article, contact the Center on Human Policy
• The Disability Blanket (1994) by Michael J. Kennedy is a reprint of an article (Mental Retardation, 32(1), 74-76) that represents the experience of how it feels to be under a one-size-and-fabric-fits-all blanket, and offers a vision for change. (3 pages). For a copy of this journal article, contact the Center on Human Policy
• Don't Mourn for Us (1993) by Jim Sinclair is an article presented as a message to parents and other people who care about autistic people. It is an outline of the presentation the author gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents. (7 pages).
  

• Promoting Inclusion in Recreation and Leisure Activities: An Information Package (1999) compiled by Pam Walker contains an overview, selected articles, and an annotated bibliography. (52 pages)
• The Kid From Cabin 17 (1988) by Pamela Walker and Betsy Edinger is a reprint of an article (Camping Magazine, May, 1988, 18-21) which tells the story of Chauncey's summer camp experience and the lessons learned about the integration of children with severe disabilities. (4 pages)
• Beyond the Classroom: Involving Students with Disabilities in Extracurricular Activities at Levy Middle School (1988) by Pam Walker, Betsy Edinger, Chris Willis, and Mary Eileen Kenney describes a variety of strategies used in a middle school in Syracuse, New York to involve students with disabilities in activities such as volleyball, cross country skiing, basketball and the Spanish club. (58 pages)

• Negotiation (2000) by Steven Taylor is designed to enable disability activists, parents, and advocates to negotiate effectively. (10 pages)
• Principles of Whistleblowing (1979) by Douglas Biklen and Milton Baker contains a list of suggestions for "whistleblowers," staff and others who want to call public attention to rights violations at service agencies. (5 pages)

• Cultivating Thinking Hearts: Letters from The Lifesharing Safeguards Project (1994) by Helen Zipperlen and John O'Brien is an exploration of the rich mix of concepts that arise from and apply to the creation of effective safeguards for lifesharing households (where people with and without disabilities choose life together); a booklet of essays and letters from various perspectives. (111 pages)
• Policy Bulletin on Safeguards addresses how safety can be increased by strengthening community and improving the assistance people receive. It also discusses the paradox of regulations.
• What Can We Count On To Make and Keep People Safe? (1990) edited by John O'Brien, Connie Lyle O'Brien and David Schwartz shares a variety of perspectives on creating effective safeguards for people with developmental disabilities, including an analysis of contrasting approaches, strategies for increasing people's safety, and options for action. (40 pages)

• Fact Sheet on Self-Advocacy (1999) by Mair Hall briefly defines what self-advocacy is, provides a brief history of the Self-Advocacy/People First Movement, and includes a brief list of resources. (2 pages) Free. To download this fact sheet in different formats, please see the Fact Sheets section of our web site.

• Materials on Self-Advocacy (1997) by Rachael Zubal, Bonnie Shoultz, Pam Walker and Michael Kennedy includes an overview article, a short listing of information available, and selected reprints. (20 pages)

• Holding the 10,000 Details: Productive Relationships Between Parents of People with Developmental Disabilities and Service Workers (2001) by John O’Brien and Connie Lyle O’Brien presents the perspectives of parents and service workers about their relationships with one another as they work to implement Wisconsin’s Self-Determination Initiative. (41 pages)
• Self-Determination in Vermont: Contributions of The Vermont Self-Determination Project (2000) by Pam Walker, Perri Harris, Mair Hall, Valerie Smith, and Bonnie Shoultz describes accomplishments and challenges to implementing self-determination in Vermont. (50 pages)
• Walking Toward Freedom: One Family's Journey Into Self-Determination (2000) by John O'Brien and Connie Lyle O'Brien illustrates, through one family's experience, the complexities of "self-determination." (32 pages)
• "Learning Community" Discussion Paper: Self-Determination in Vermont (1999) by Pam Walker, Bonnie Shoultz, Mair Hall, and Perri Harris is a report discussing lessons and issues raised during the initial stages of implementation of the Vermont Self-Determination Project. (30 pages)
• Focus on Vermont's Self-Determination Project (1998) by John O'Brien is a summary of a focus group discussion during initial stages of implementation of the Vermont Self-Determination Project. (13 pages)
• Fact Sheet: Summary of Self-Determination (1998) by Michael J. Kennedy and Lori Lewin summarizes what self-determination is and is not, the principles of self-determination, the values supported by self-determination, and a call for changes in the system in order for self-determination to truly succeed. (2 pages) Free. To download this fact sheet in different formats, please see the Fact Sheets section of our web site.
• Implementing Self-Determination Initiatives: Some Notes on Complex Change (1997) by John O'Brien offers his reflections about complex change, generated after a review of 10 of 38 proposals submitted by states to the Robert Wood Johnson Foundation in the summer of 1996. (40 pages) $2.95

• "You're Not A Retard, You're Just Wise": Disability, Social Identity, and Family Networks (2000) by Steven J. Taylor is a reprint of an article (Journal of Contemporary Ethnography, 29(1), 58-92) that examines the social meaning of disability and the construction of social identity in a family whose members, as well as numerous kin and friends, have been officially defined as handicapped, disabled or mentally retarded. This article examines, in depth, how family members and their broader social network construct the meaning of disability labels in nonstigmatizing ways and define themselves and each other in terms of their personal characteristics and family relationships. (35 pages). For a copy of this journal article, contact the Center on Human Policy
• Relationships with Severely Disabled People: The Social Construction of Humanness (1989) by Robert Bogdan and Steven J. Taylor is a reprint of an article (Social Problems, 36(2), 135-148) that presents the perspectives of nondisabled people who do not stigmatize, stereotype, and reject those with obvious disabilities. (14 pages). For a copy of this journal article, contact the Center on Human Policy
• On Accepting Relationships Between People with Mental Retardation and Nondisabled People: Towards an Understanding of Acceptance (1989) by Steven J. Taylor and Robert Bogdan is a reprint of an article (Disability, Handicap & Society, 4(1), 21-26) that outlines the sociology of acceptance, a theoretical framework for understanding relationships between people with mental retardation and typical people. (16 pages). For a copy of this journal article, contact the Center on Human Policy

• Beating the Odds: People with Severe and Profound Disabilities as a Resource in the Development of Supported Employment (2002) by John O’Brien and Connie Lyle O’Brien discusses what organizations can learn from assisting people with severe disabilities in employment. (20 pages).
• Know Your Rights! Working and the Americans with Disabilities Act (ADA) (1997) by Mair Hall and Perri Harris is a manual designed specifically for people with disabilities who want to learn about their employment rights under the ADA. A list of relevant resources and law cases is also available upon request. (26 pages).
• Getting the Job Done: Learning to Expand the Social Resources Available to People with Severe Disabilities at Work (1992) by John O'Brien presents ideas on how everyone involved can work together to support people with severe disabilities at work. (7 pages).
• Working On... A Survey of Emerging Issues in Supported Employment for People with Severe Disabilities (1990) by John O'Brien presents the common perspectives and themes of groups in seven states concerned with improving the quality of supported employment . (34 pages).

• Community for All is Possible: Promoting Home and Community Life at Community Vision, Inc. (2001) by Pam Walker describes Community Vision, an agency in Portland, Oregon that has assisted people to move out of institutions and nursing homes and live in the community. (17 pages).
• Acting on a Vision: Agency Conversation at KFI, Millinocket, Maine (2000) by Pam Walker describes closure of facility-based services and the provision of inclusive day time and residential supports. (20 pages).
• Innovative Practices in Supported Living: An Overview of Organizations, Issues, and Resource Materials (1996) edited by Kathy Hulgin, with Bonnie Shoultz, Pam Walker and Steve Drake, is a comprehensive resource package on supported living. It includes examples of agencies around the country that are successfully implementing a supported living approach and a discussion of related issues, such as housing and person centered planning. It also includes an annotated bibliography of written materials and information about World Wide Web sites that address supported living issues. (66 pages).
• Jay Nolan Community Services: The Advantages and Dilemmas of Converting Quickly from Group Homes to Supported Living Services(1996) by Kathleen Hulgin describes the strategies and challenges of changing from group homes to supported living in an agency serving people with autism and other developmental disabilities. (22 pages).
• Feature Issue on Supported Living (Autumn 1995) is a compilation of short articles describing supported living, giving numerous examples of agency approaches to supported living, and offers the perspectives of people with disabilities about supported living. This bulletin was published through the Impact series of the Institute on Community Integration at the University of Minnesota in cooperation with the Center on Human Policy.
• Living with the Questions: Notes from a Gathering of People Concerned with Supported Living(1995) reported by John O'Brien and Connie Lyle O'Brien summarizes a discussion about supported living: the hard questions, the problematic effects of current system design, the concerns in day-to-day work, and more. (37 pages).
• More than Just a New Address: Images of Organization for Supported Living Agencies (1991) by John O'Brien and Connie Lyle O'Brien discusses the changes agencies must make in moving to a "supported living" approach to community living, and is based on in-depth work with a number of agencies and individuals across the United States. (43 pages).
• The Transition to Supported Living: Realizing the Moment and Moving On (1995) by John O'Brien is an evaluation report of Jay Nolan Community Services, an agency in California that has transitioned from group homes to supported living services. (43 pages).
• Supported Living: What's the Difference? (1993) by John O'Brien discusses the differences between supported living and the traditional ways of providing residential services, based on discussions among representatives of supported living agencies. (18 pages).

To order any these publications, contact: