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Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities

Resources

Recently Released Resources on Supported Decision-Making

Supported Decision-Making (SDM) Bootcamp: Training Videos and Materials

This series of five free online video modules, available in English and Spanish, teaches parents and other family members about Supported Decision-Making as a way for people with disabilities to make their own decisions and direct their own lives with the help of their friends, family, and professionals. These videos of parent workshops presented by Arc California – in collaboration with the Burton Blatt Institute at Syracuse University, KPS4Parents, and The WITH Foundation – were released in 2019 and cover the lifespan. 

Supported Decision-Making and the Role of Siblings

In this June 2019 presentation from the Sibling Leadership Network Conference PDF held in St. Paul, Minnesota, Tina Campanella, CEO of Quality Trust for Individuals with Disabilities, outlined the essential elements for using Supported Decision-Making (SDM) with attention to the requirements for the role of supporter – especially if the supporter is a sibling. The presentation posed questions for siblings such as what decisions does your brother or sister make every day in their life, what decisions do they need help with, what are critical issue for family members to address, and what does a supporter do?

Self-Determination: Definition, Interventions, Outcomes, and Implications in Autism Spectrum Disorder 

Special education professor Karrie Shogren of the University of Kansas, Lawrence, shared her work on the role of self-determination in supporting autistic people as they transition to adulthood at the 2019 Autism Speaks Thought Leadership Summit on Transition to Adulthood. In this video of her presentation, she discusses how the individual with a disability and what they want for their lives must be the focus of self-determination research and practice. 

Resources on Self-Determination in Education

Self-Determination.org 

This website from the Kansas University Center on Developmental Disabilities offers resources for K-12 educators on self-determination, including student assessment and intervention systems, the Self-Determined Learning Model of Instruction (SDLMI), information on research into self-determination, and additional resources. 

Supporting the Self-Determination of Students with Special Education Needs in the Inclusive Classroom

“Self-determination is closely related to the quality of life of children and youth with disabilities and their success academically and later in work settings. Supporting self-determination begins in the family and needs to continue in the school context.” That is the opening of this chapter on self-determination in the book, Inclusive Education Strategies: A Textbook. This textbook is a resource for implementing inclusive education practices in Armenia, other post-Soviet countries, and countries on the path to a more inclusive education and society. It was developed through a collaboration of staff at the University of Minnesota's Institute on Community Integration, University of Minnesota faculty, and other U.S. experts in inclusive education as well as faculty at the Armenian State Pedagogical University, staff at UNICEF Armenia, and other educators in the Republic of Armenia. 

How Self-Determined Are You? A Toolbox of Resources to Help Build Self-Determination Skills

Published by the I’m Determined project, a state-directed project funded by the Virginia Department of Education, this resources toolbox PDF provides ways for youth and those who support them to identify, practice, and increase skills associated with self-determined behavior. It facilitates youth, especially those with disabilities, to undertake a measure of control in their lives, helping to set and steer the course rather than remaining the silent passenger. 

Consider the Alternatives: Decision-Making Options for Young Adults with Intellectual Disabilities

This brief in the Insight series from Think College helps families become fully informed about guardianship as well as less-limiting alternatives for their young adult with disabilities as they plan for postsecondary life. The brief defines some of the options and possible ramifications. It also presents special circumstances for consideration, and suggests ways to promote self-determination no matter which option is chosen. The Insight series is published by the Think College project of the Institute for Community Inclusion at the University of Massachusetts, Boston.

Resources on Self-Determination and Community Living

Self-Determination: A Critical Aspect of Community Living

“Whether residing in a large industrial city or a small village in a rural area, the exercise of self-determination is linked to a high quality of life for people with intellectual and developmental disabilities (IDD).” So opens this chapter on self-determination in the book, Handbook on Community Living and Employment, published by the Institute on Community Integration and by Life Route Foundation in Moscow, Russian Federation. The book highlights key topics in community living and employment services/supports relevant to those within the human services systems, as well as people with disabilities and their families, in the U.S. and the Russian Federation.

Policy Research Brief: Developments in Living Arrangements and Choice for Persons with Intellectual and Developmental Disabilities

While there has been a big shift in where people with intellectual and developmental disabilities (IDD) live over the last 40 years, from large institutional settings to smaller and more individualized settings, their opportunities to make choices are still limited in some ways. This policy research brief explores the changes in living arrangements and opportunities to make choices over time as well as the relationship between the two. Further, the brief explores the differences and similarities in choice-making for people with IDD in two settings: living with family versus living in small group homes – a distinction that has not been widely studied. The brief is published by the Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota.

Resources for Supporting Self-Determination and Decision-Making

Mental Health and Supported Decision Making: Lived Experience Perspectives

Healthtalk Australia is a consortium of researchers based at RMIT University, the University of Sydney, Monash University, and UNSW conducting qualitative research into experiences of health and illness. They travelled around the state of Victoria in Australia to talk to 29 people from a range of backgrounds who have received various psychiatric diagnoses. On this website people’s stories are presented on film and audio-recording. They share their experiences of diagnosis, medication, hospitalization, health professionals, discrimination, and personal recovery, and their views about how they could best be supported by health professionals in making decision about treatments and other aspects of their lives. 

How to Make a Supported Decision-Making Agreement: A Guide for People with Disabilities and Their Families

This online booklet from the Disability Rights Program of the American Civil Liberties Union Foundation PDF (ACLU) helps individuals with disabilities start using Supported Decision-Making. It has questions and activities that help users think about how they want to use Supported Decision-Making, and discuss their needs and preferences with others. It includes the “When Do I Want Support Worksheet” that individuals can use to identify the life areas where they do not need support, those where they need support, or and those where they need someone else to do it for them.

Least Restrictive Approaches to Supporting Individuals as Decision-Makers (Fact Sheet)

This fact sheet, from the Rural Institute on Disability at the University of Montana, explores alternative approaches to guardianship that are flexible and can adapt to the changing needs an individual with a disability may experience. It provides tools for individuals and their supporters to use to determine which option on a continuum of decision-making supports is the best fit for them. 

Resources on Using Supported Decision-Making 

National Resource Center for Supported Decision-Making 

The National Resource Center for Supported Decision-Making can help people find information on Supported Decision-Making, connect them with other individuals and organizations, and answer questions. On its website are videos and stories of people who use Supported Decision-Making; education and training materials about Supported Decision-Making; links to laws, policies, and organizations in states; and “Supported Decision-Making Interactive!,” where people can connect with others in similar situations and ask questions of national experts. 

Center for Public Representation: Supported Decision Making 

The Center for Public Representation, a national legal advocacy center for people with disabilities, operates this website about Supported Decision-Making. The site includes extensive information and resources, including an SDM agreement form, as well as information and tools on trying out SDM while under guardianship, SDM and financial decisions, SDM and health care decisions, SDM as an international movement, organizations advocating for SDM, and U.S. supported decision-making laws. 

Frontline Initiative: Issue on Choice, Direction, and Control (Vol 14, #2, 2017)

“The support you provide as a DSP may be key to helping that person live a more empowered life,” says the opening article in this issue of Frontline Initiative, the newsletter for Direct Support Professionals (DSPs). The issue features a variety of articles for DSPs and service provider agencies on Supported Decision-Making and other aspects of self-determination exercised by people with disabilities. The focus is on how DSPs can support the exercise of choice, direction, and control by those they support. The issue is accompanied by a video discussion of the topic. Frontline Initiative is published by the National Alliance for Direct Support Professionals and the University of Minnesota’s Research and Training Center on Community Living, Institute on Community Integration.

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