Supported Decision-Making - Publications And Reports
Coming Together: Mental Health, Equality, and Human Rights (2007), by the Equality and Human Rights Commission (formerly Disability Rights Commission), sets out the priorities of the Disability Rights Commission's Mental Health Action Group for the newly established Equality and Human Rights Commission.
Independence, Choice and Risk: A Guide to Best Practice in Supported Decision-Making - Executive Summary (2007), is a guide for the use of everyone involved in supporting adults using social care within any setting, whether community or residential, in the public, independent or voluntary sectors. It presents a set of common principles that can be used as the basis for approaches to supporting the decision-making of people using social care and manage risks in relation to those choices.
Human Rights and the Guardianship in the Czech Republic (2007), by Mental Disability Advocacy Center (MDAC), is an analysis of national guardianship law and policy.
Guardianship as a Barrier to Social Inclusion (2007), by Gabor Gombos, argues that supported decision-making is a solution to social inclusion and the integration of people with an intellectual disability, while substitute decision-making, or guardianship, is a barrier.
Guardianship and Alternatives. Legal Assistance, a brief prepared by the Council on Mental Retardation Leadership Institute, outlines the gradual development of major alternatives to guardianship, including: family and friends assistance, citizenship advocates, trust funds, check signature card, representative payee, power of attorney, (limited) conservatorship, among others.
It's My Choice, by the Minnesota Governor's Council on Developmental Disabilities, St. Paul, Minnesota, USA, is a resource guide developed to assist advocates in supporting freedom of choice for people with intellectual disabilities. The guide is written in simple language and includes photocopy-compatible workbook pages. It is designed to assist people with intellectual disabilities in making decisions about their own lives, and it stresses the important role of self-advocacy.
People with Intellectual Disabilities Can Decide More by Themselves (2006), from the European Platform of Self-Advocates and Inclusion Europe, offers eight suggestions on how family members and professionals can promote self-advocacy and support people with intellectual disabilities in being self-advocates. The brochure is also available in French, Italian, Dutch, Greek, Czech, Spanish, and Portuguese. Please contact self-advocacy@inclusion-europe.org or visit http://www.inclusion-europe.org/ for more information.
Supported Decision-Making Agreements: Could This Help Me, by Yukon Health and Social Services, describes the basic features of supported decision-making, and explains why people might need this form of assistance as opposed to another. The publication, developed in order to enable people to exercise supported decision-making, is a toolkit that provides examples of how to create supported decision-making agreements.
Human Rights and Guardianship in Bulgaria (2006), by Mental Disability Advocacy Center (MDAC), is an analysis of national guardianship law and policy.
Human Rights and Guardianship in Hungary (2006), by Mental Disability Advocacy Center (MDAC), is an analysis of national guardianship law and policy.
Human Rights and Guardianship in Russia (2006), by Mental Disability Advocacy Center (MDAC), is an analysis of national guardianship law and policy.
Human Rights and Guardianship in Serbia (2006), by Mental Disability Advocacy Center (MDAC), is an analysis of national guardianship law and policy.
Legal Capacity, Personhood, and Supported Decision-Making (2006), by Michael Bach, outlines key terms and definitions, concepts and issues of supported decision-making, and presents the position of the Canadian Association for Community Living (CACL) on the provisions about capacity in the United Nations Convention on the Rights of Persons with Disabilities.
The Report of NDA Seminar on the Draft UN Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities (2006), was prepared by Irish National Disability Authority (NDA). The purpose of the seminar was to bring together colleagues from the disability, human rights and equality sectors in Ireland to identify key issues regarding capacity, which could be addressed in United Nations Convention on the Rights of Persons with Disabilities. The seminar also aimed to formulate key conclusions on the inclusion of capacity within the Convention to inform further discussion on this issue.
Legal Capacity: Position Paper (2006), by Inclusion International, asserts the right of every person with an intellectual disability to have their right to make decisions recognized, and to receive the support they require in making those decisions. People should never be asked to give up their legal capacity in order to qualify for supports and services.
Clinical Decision-Making and Views About Psychiatric Advance Directives (2006), by Eric B. Elbogen, Marvin S. Swartz, Richard Van Dorn, Jeffrey W. Swanson, Mimi Kim, and Anna Scheyett, analyzes clinicians' understanding and perceptions of the legal tools authorizing psychiatric advance directives. Such laws allow people to document instructions or designate a health care agent to communicate their preferences for future mental health treatment in the event of an incapacitating crisis.
Hungary's Situation on Legal Capacity, Guardianship, and Supported Decision-Making, by ÉFOÉSZ (the Hungarian Association for Persons with Intellectual Disabilities), was prepared for the Inclusion Europe´s conference.
Self-Determination: What Is It? Why Is It Beneficial? How Is It Best Taught? (2005), by Sharon Field, examines the value and impact self-determination can have on the lives of persons with disabilities. Key ideas addressed in the document include: self-determination requires an understanding of one's strengths and limitations and a belief in oneself as capable and effective; students who help to choose their school activities are more motivated to perform those tasks; and adults can support student self-determination in a variety of ways. The document is available from the Center for Educational Networking, Charlotte, Michigan, USA.
Response to the Consultation on the Code of Practice (2005), by the Making Decisions Alliance (MDA), is feedback on the Mental Capacity Act´s Draft Code of Practice, which will be crucial in setting relevant standards for the implementation of the Code.
Evaluation of a Decision-Making Curriculum Designed to Empower Women With Mental Retardation to Resist Abuse (2005), by Ishita Khemka, Linda Hickson, and Gillian Reynolds, examines the effectiveness of an abuse-prevention curriculum, designed to empower women to become effective decision-makers able to protect themselves. Its findings suggest that women with mental retardation or intellectual disability can acquire effective decision-making strategies and apply them to situations of abuse in their lives.
Eliminating the Pervasiveness of Guardianship (2005), by Dohn Hoyle, argues that the principles and practices of person-centered planning and self-determination provide the tools to support individuals with disabilities to have the lives they want in the community, making guardianship unnecessary.
Re-thinking Guardianship (2005), by Dohn Hoyle and Kathleen Harris, argues that only the person-centered planning can genuinely respect the individual's preferences, choices and abilities. It analyzes major alternatives to guardianship, and calls for exploring many more options that can be devised.
Peace of Mind for You and Your Relative with a Disability (2004), a CD-Rom by Al Etmanski, is based on the best-selling book, A Good Life for You and Your Relative with a Disability. It contains stories, testimonials, tips, and worksheets to help with future and financial planning. Information about the CD-ROM is available free of charge at: Quality Mall website.
The MacArthur Treatment Competence Study: Executive Summary (2004), was supported by the Research Network on Mental Health and the Law of the John D. and Catherine T. MacArthur Foundation. The study was designed to provide information to policy-makers and clinicians to help them address questions about the decision-making capacities of people who were hospitalized with mental health problems.
The Road Map to the Future: A Financial Planning Guide for Families of People with Disabilities (2003), by Rita McLeod, is a user-friendly workbook for families dealing with a variety of issues and considerations when planning a secure financial and social future for a relative with a disability. While laws are specific to Saskatchewan, the ideas are universally applicable. Free information about the workbook is available at: Quality Mall website.
Self-Determination and Young Adults: Seeking a State of Mind (2003), by Calvin and Tricia Luker, discusses the difference between guardianship and self-determination as frameworks for the life planning of young people with disabilities.
Self-Determination: Supporting Successful Transition (2003), written by Christine D. Bremer, Mera Kachgal and Kris Schoeller, available on the website of the National Center on Secondary Education and Transition (NCSET), provides information on self-determination in youth with disabilities, and offers tips for families and professionals on promoting self-determination in this age group.
Guardians: Helping People with Impaired Decision-Making Capacity (2002), a factsheet by the Government of Queensland, Australia, explains the role, qualifications, powers, and duties of a guardian, as well as selection of a guardian and other procedures.
Statement Submitted to the UN Convention United Nations Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities (2002), is an intervention by an NGO "insane australia" on the UN Convention that brought to the Ad Hoc Committee´s attention the fact that the rights of persons with mental health problems were not sufficiently addressed in the draft document. It also includes the statement from the World Network of Users and Survivors of Psychiatry.
Joint Committee on the Draft Mental Incapacity Bill First Report (2002), a publication by the Parliament of the United Kingdom, in Chapter 6 (Clauses 1-3), discusses the definition of decision-making capacity. It supports the principle of presumption of capacity which underpins the draft Bill. It recommends that every effort should be made in both mental health legislation and in the Codes of Practice to ensure that they are enabling rather than restricting.
Guardianship in Central and Eastern Europe - Protecting the Vulnerable? (2002), by Oliver Lewis, argues that guardianship prevents those most abused by the system from complaining about it: having been stripped of "legal personality," the incapacitated person's signature becomes invalid; at the same time abuses of the human rights of people with mental disabilities pervades the entire system. The full article is available for a fee. The abstract is available free of charge at: http://www.ialmh.org/amsterdam2002/11.07/human.rtf.
Parent Brief: Promoting Effective Parent Involvement in Secondary Education and Transition (2002), is produced by the National Center on Secondary Education and Transition (NCSET) and the Parent Advocacy Coalition for Educational Rights PACER Center. Parents want their children to have the skills they need to succeed as adults, including decision-making skills. While this is important for every young person, youth with disabilities often face extra challenges. That is why such youth need to be actively involved in setting their high school goals and planning for their transition to adulthood well before they reach the age of majority.
Illinois Guardianship Reform Project (2001), was edited by Fred A. Morris. The Guardianship Reform Project´s purpose was to identify State problems and develop a model reform plan for the adult guardianship system in Illinois, focusing on guardianship of the person (as opposed to guardianship of the estate, which solely addresses financial issues). Free information on the project is available at: Quality Mall website.
Guardianship of Adults: A Decision-Making Guide for Family Members, Friends, and Advocates (2000), published by the Wisconsin Department of Health and Family Services/Division of Supportive Living, provides an overview of guardianship, and aims to respond to questions that are often asked about the nature, purpose, and effects of guardianship, alternatives to guardianship, and ways to tailor guardianship to individual needs.
A Good Life - For You and Your Relative with a Disability (2000), by Planned Lifetime Advocacy Network (PLAN) is a resource guide on long-term planning for individuals with disabilities. It is intended for families, advocates, friends, professionals, and caregivers. Basic concepts on supported decision-making from the book are available free of charge at: http://www.plan.ca/Programs_Decisions.php.
BIALA - II. "I Understand You" (1998), by Anthony Shaddock and Anthony Spinks, is a guide understanding special communication styles of individuals with disabilities. It has been prepared to assist people in understanding the unique communication characteristics of individuals with developmental disabilities, brain injuries, Alzheimer disease, or psychiatric conditions that may interfere with the person´s ability to communicate or articulate his or her wishes.
Listen, Lady, This Is My Life: A Book of Stories about Personal Futures Planning (1992), by A.N. Amado & P.J. Lyon, is a compilation of personal stories about changes in the lives of people with intellectual disabilities when they were provided with support that allowed them to speak for themselves and to be involved in decisions about their own lives. The book also includes strategies for personal futures planning and information on other related resources.
Making Futures Happen: A Manual for Facilitators of Personal Futures Planning (1990), by Beth Mount and Kay Zwernik, is designed for people interested in facilitating a Personal Futures Planning process. The workbook provides an overview of the basic values and approach of Personal Futures Planning, as well as a tool box of strategies to help facilitators along the way. It is available from the website of the Minnesota Governor's Council on Developmental Disabilities.
Telling New Stories: The Search for Capacity among People with Severe Handicaps (1989), by John O'Brien and Beth Mount, describes different methods of life support for people with severe disabilities, encouraging a focus on the person and on each individual's capacities.