Self-advocacy and self-determination


Developments in Living Arrangements and Choice for Persons with Intellectual and Developmental Disabilities (2018)

A brief examining how living arrangements and choice have changed for people with intellectual and developmental disabilities (IDD) over the past 10 years. Choice is an important component of self-determination, which is a person's ability to decide about the parts of life that person wants to control. While there has been a big shift in where people with 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 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. (Publication Date: February 22, 2018)

Staff: Roqayah Ajaj, James Houseworth, Renata Ticha, John G Smith

Choice, Direction, and Control (2018)

A companion webinar to the *Frontline Initiative* issue titled, ["Choice, Direction, and Control"]( Host John Raffaele, Director of Educational Services at NADSP and authors Desiree Loucks Baer and Matthew Hezzy Smith have a conversation about supported decision making, informed decision making and being person centered as a direct support professional. They discuss the limitations of guardianship and help direct support professionals understand the role that they play in the lives of people who may have guardians. They share insights and information about the importance of always presuming that people with intellectual and developmental disabilities deserve the most possible level of control over their destiny and self-determination. (Publication Date: February 14, 2018)

Collaborators: National Alliance for Direct Support Professionals

Valuing Lives: Wolf Wolfensberger and the Principle of Normalization (2016)

A film documenting the social paradigm shift triggered by Wolf Wolfensberger, a professor and change agent who, in the early 1970s, popularized and expanded the principle of normalization of people with disabilities into a framework for community inclusion. People are often judged according to how they conform to commonly-held beliefs of what is normal - normal appearance, behavior, ability. And those deemed "abnormal" can be considered undeserving of common respect, dignity, and even basic rights. For many with intellectual and developmental disabilities, this has meant segregation, isolation, and exclusion, with little or no opportunity to access the good things in life. Through archival images and footage, and dozens of interviews, *Valuing Lives* explores the principle of normalization, an idea originating in Scandinavia that challenged fundamental assumptions about people with intellectual disabilities, and the iconoclastic professor whose writings and intense workshops trained thousands of human services professionals in the theory and practice of this idea. This brought about a sea change in thinking at a time when it was considered normal to warehouse nearly 200,000 Americans with intellectual disabilities in large institutions. Wolfensberger helped change the conversation from institutional reform to rethinking society's assumptions of disability and the role of human services. There are still institutions for people with intellectual disabilities, and some voices are calling for new, segregated communities where, it is believed, they will be safer "with their own kind." It is time for a new generation of leaders to rediscover the principle of normalization. (Publication Date: April 05, 2016)

Staff: Jerry W Smith

Collaborators: Institute on Disabilities, Temple University [Philadelphia, PA]

I Choose Employment (#1) (2016)

A video designed to raise expectations for full workforce participation - that work can be a reality for anyone. The target audiences are self-advocates and families. (Publication Date: March 02, 2016)

Staff: Kelly Nye-Lengerman LGSW

Employment Policy: How Does That Work? (#2) (2016)

A video following a question-and-answer format, in plain and simple language from self-advocates and policy staff about changes in employment policy and services. The target audiences are self-advocates and families. (Publication Date: March 02, 2016)

Staff: Kelly Nye-Lengerman LGSW

Self-determination and Self-advocacy for people with intellectual and developmental disabilities (2016)

A pair of videos and an [accompanying brief]( outlining the value of self-determination and self-advocacy among people with intellectual and developmental disabilities. A researcher and a self-advocate both provide short presentations. (Publication Date: March 01, 2016)

Staff: Jerry W Smith

Feature Issue on the ADA and People with Intellectual, Developmental, and Other Disabilities (Winter 2015)

A newsletter issue marking the 25th anniversary of the Americans with Disabilities Act (ADA). In this *Impact* are articles by individuals with disabilities, families, advocates, service providers, researchers, and others talking about how the ADA has made a difference in their lives, the lives of their loved ones, and in our nation. At the same time, this *Impact* also focuses on ways in which the ADA hasn't fully addressed a number of the barriers faced by people with intellectual and developmental disabilities as they seek equal opportunity and inclusion in their communities. By sharing this range of perspectives, the issue encourages readers to both pause to celebrate the anniversary of the ADA as a turning point in our nation's journey, and continue traveling toward that horizon of full inclusion we have yet to reach. Complementing the *Impact* are over 40 short video clips posted on the Self-Advocacy Online Web site [(]( of the Research and Training Center on Community Living in which people with disabilities talk about the importance and meaning of the ADA for them. (Publication Date: March 26, 2015)

Staff: Vicki D Gaylord, Amy S Hewitt, Clifford L Poetz

Social Capital (May 2014)

A newsletter issue for Direct Support Professionals (DSPs) exploring the importance of social capital in the lives of the people they support. Social capital is the value a person gets from participating in social networks, such as families, friends, school, work, and faith-based organizations. Involvement of people with disabilities in social networks also brings value to the community. Integrated communities provider richer experiences for all. These networks help people find jobs, homes, transportation, advisors, volunteer opportunities, and confidants. Individuals with developmental disabilities often have small social networks and limited opportunities to gain social capital, but families and DSPs understand this problem and this issue of *Frontline Initiative* may help solve it. (Publication Date: May 13, 2014)

Staff: Connie J Burkhart

Feature Issue on Stories of Advocacy, Stories of Change from People with Disabilities, Their Families, and Allies (1988-2013) (2014)

A newsletter issue featuring then-and-now personal stories from individuals with disabilities, their families, and allies that provide a snapshot of how the disability rights movement has touched individual lives over the past 25 years. This 25th anniversary issue of *Impact* brings together personal stories published in its pages between 1988-2010, and pairs them with new stories from those same individuals and families that bring readers up-to-date on their lives today. Through these stories, plus an interview with the Institute's founding director Bob Bruininks, this *Impact* recognizes the tenacity, courage, and vision of those working to bring about progress toward full citizenship and community inclusion for people with disabilities in the U.S. (Publication Date: May 09, 2014)

Staff: Vicki D Gaylord

Research and Training Center on Community Living (RTC-CL) Website (2014)

A website presenting the Research and Training Center on Community Living (RTC-CL), a center that conducts a wide range of research, training, and technical assistance and dissemination projects related to community supports under its center grant and related project funding. The RTC-CL is NIDILRR's national center on community living and participation for persons with intellectual and developmental disabilities. RTC-CL is a center within ICI. (Publication Date: January 01, 2014)

Staff: Kristin Dean, Shawn C Lawler, Jonathon P Walz

State of the Science: Theories, Concepts, and Evidence Guiding Policy and Practice in Community Living and Participation for People with Intellectual Disabilities (2013)

A set of online video presentations from the July 2012 conference, State of the Science: Outcomes for People with Intellectual and Developmental Disabilities in Halifax, Nova Scotia. Experts in their fields discuss the most influential theories, principles, and "big ideas" that shape policy and practices in community supports for people with intellectual or developmental disabilities around 9 topical areas: 1. Community participation and social inclusion 2. Employment and economic self-sufficiency 3. Family support 4. Health and wellness 5. Methodological issues 6. Outcome data 7. Predictors of outcomes 8. Quality of life indicators 9. Self-determination The videos also include discussions by self-advocates and other stakeholders on many of the topics. (Publication Date: June 03, 2013)

Staff: Kristin Dean, Shawn C Lawler, Jerry W Smith

Self-Advocacy Online (2012-Present)

A multimedia resource providing information important to people with intellectual and developmental disabilities that is accessible to all. The content is translated into understandable language and includes videos, interactive lessons, and engaging graphics. Users can: * Explore lesson modules on key topics in self-advocacy. * Learn about research findings that are important to people with disabilities in an accessible format. * View stories from other self-advocates and hear what they have to say about key topics in self-advocacy. * List self-advocacy groups and find self-advocacy groups across the United States. (Publication Date: June 01, 2012)

Staff: John D Westerman, Shawn C Lawler, Mark R Olson, Jerry W Smith, John G Smith, Connie J Burkhart

Collaborators: The Arc of the United States

Leadership in the History of the Developmental Disabilities Movement Wiki (2011)

This interactive multi-media database profiles key leaders in the developmental disabilities movement. Video presentations include features of effective leadership and styles of leadership required for sustainable change. Supporting content provides historical trends, public and professional perceptions, and the evolving context of services available to people with disabilities. The wiki format allows users to add and modify content. (Publication Date: March 01, 2011)

Staff: John D Westerman, Shawn C Lawler, Jerry W Smith

Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities (Spring/Summer 2010)

A newsletter issue exploring the question "What does it mean to affirm and support a positive, healthy sexuality for individuals with disabilities?" Its articles cover topics ranging from sexuality education in the home and school, to personal stories of dating and marriage, to legal and ethical issues for staff and agencies providing services for people with disabilities. The goal of this issue is to provide information and inspiration that further support the right and opportunity for people with intellectual, developmental, and other disabilities to understand and express this essential dimension of human life. (Publication Date: September 01, 2010)

Staff: Vicki D Gaylord

We Have Choices (2010)

An award-winning documentary profiling individuals with developmental disabilities across New York state who have used individualized supports in taking greater control of their lives. Traditionally, funding for people with disabilities has gone directly to agencies that provide support services. Now, individuals have the opportunity to control their budgets and choose the services they want and need. In New York state, supports are available to help people make the move from living in large group homes to living in their own homes with one or two housemates. *We Have Choices* includes profiles of eight people who have made the move to their own homes, as well as discussions with service providers and Direct Support staff. Produced by the Institute's RTC Media in collaboration with the Self-Advocacy Association of New York State (SANYS). Length: 29 minutes. CC. Can be viewed online at []( Information about ordering the DVD, which is being distributed by SANYS, is available on the Web site or by calling them at (518) 382-1454. (Publication Date: January 01, 2010)

Staff: Jerry W Smith

Collaborators: Self Advocacy Association of New York State

RTC Media Website (2015)

A website showcasing films about people with disabilities and those who provide support. Also describes the film-making services available through RTC Media. (Publication Date: January 01, 2010)

Staff: Shawn C Lawler, Jerry W Smith

An Independent Assessment of the Region 10 Quality Assurance Commission Voice Review Program (2008)

A report on the VOICE program, a person-centered quality assurance system that emphasizes self-determination and involves community volunteers, people with disabilities, and professionals to determine the quality of services provided. VOICE was created by the Region 10 Quality Assurance Commission in southeast Minnesota. (Publication Date: April 16, 2008)

Staff: Jerry W Smith, John G Smith

Find, Choose and Keep Great DSPs (2006)

A pair of easy-to-use toolkits helping families and people with disabilities find quality, caring, and committeed Direct Support Professionals (DSPs). There are two different versions of the tookit: one for people with disabilities and one for their family members and support providers. These toolkits, which can be used together or separately, provide: * Information on where in the community individuals and families can find the best DSPs to meet their needs. * Information on how individuals and families choose the best DSP for their needs, including how to develop a realistic job preview. * Information on how to train and support DSPs in the job so they stay longer. * A CD that provides worksheets, sample realistic job previews, and other resources. (Publication Date: January 01, 2006)

Staff: Amy S Hewitt, Nancy J McCulloh

Quality Mall (2004 - Present)

An interactive database providing an online clearinghouse of over 3,500 resources from around the country related to person-centered services and supports for persons with intellectual and developmental disabilities. For use by individuals with disabilities, families, advocates, government officials, and service providers, it covers a wide variety of topical areas related to community participation and inclusion, and quality of life. Quality Mall is managed by the Institute's Research and Training Center on Community Living. (Publication Date: January 01, 2004)

Staff: Claire Cunningham, Jerry W Smith, Julie E Dahlof Kramme, John G Smith

Changing Roles (2002)

A newsletter issue for Direct Support Professionals offering various perspectives on effectively supporting individuals with disabilities as they move into their communities, gain control of their resources and services, and decide their lives for themselves. (Publication Date: January 01, 2002)

Staff: Lynda L Anderson, Amy S Hewitt

Collaborators: National Alliance for Direct Support Professionals

Self-Determination (Spring 1999)

A newsletter issue for Direct Support Professionals offering various perspectives on effectively supporting individuals with disabilities as they decide for themselves how to spend their lives. (Publication Date: April 01, 1999)

Staff: Amy S Hewitt, Susan N ONell

Collaborators: National Alliance for Direct Support Professionals

Through Asking the Right Questions... You Can Reach Your Destination (1999)

A pocket guide containing questions for families and persons with disabilities to ask as they interview residential service providers and decide which are best suited to meet their support needs. (Publication Date: January 01, 1999)

Staff: Brian H Abery, John G Smith