Consumer/self-directed services


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

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]

Of the Community: Eight Stories of Community Living, Participation, and Inclusion (2015)

A film telling the stories of eight individuals with disabilities who have vibrant lives in which they live and participate in their communities in the ways they choose. Their stories illustrate the power of respect, imagination, flexibility, high expectations, and commitment to providing truly individualized, person-centered supports. Those have been found to be the keys to supporting people with intellectual and developmental disabilities to be truly *in* and *of* their communities. Their stories may be personal, but they reflect decades of social progress and ongoing challenges. Forty years ago, large institutions that warehoused thousands of people with disabilities were common. Today, most people with intellectual and developmental disabilities in the U.S. live in their communities with their families, in group homes, or in houses and apartments with needed supports. However, while many live *in* their communities, they are not *of* their communities. This is, in part, because of institutional mindsets that are present in many community group homes and other services in the U.S. In addition, there are efforts resurfacing to build new segregated institutions in spite of decades of research showing that people with intellectual and developmental disabilities have happier, healthier, and more productive lives when they live in smaller community homes with individualized supports and services. Today, people with disabilities expect to live where and with whom they choose, work in real jobs with real wages, be connected with family and friends in deep personal relationships, practice faith if and as they choose, grow through lifelong learning, explore personal interests, experience physical and emotional well-being, have choices, take risks, and accept the responsibilities of citizenship. (Publication Date: October 01, 2015)

Staff: Jerry W Smith

Services for People with Intellectual and/or Developmental Disabilities in the U.S. Territories (May 2015)

A report describing services and supports available to people with intellectual and developmental disabilities in five U.S. Territories (American Samoa and the Commonwealth of the Northern Marianas Islands, Guam, Puerto Rico and the Virgin Islands). It was developed as a joint project of the Residential Information Systems Project (RISP), the Supporting Individuals and Families Information Systems Project (FISP), State of the States and State data, which are all ACL-funded data projects of national significance. (Publication Date: May 01, 2015)

Collaborators: Institute for Community Inclusion, University of Massachusetts Boston, Research and Training Center on Community Living, State of the States in Developmental Disabilities

Residential Setting and Individual Outcomes: An Assessment of Existing National Core Indicators Research (July 2014)

A brief providing states with information to help their new policy and service developments comply with regulatory criteria that the Centers for Medicaid and Medicare Services specified in March 2014 regarding the character and location of residential services for recipients of Home and Community-Based Services waivers and state plan services. States must evaluate existing services to ensure such programs afford individuals with disabilities the same access to the community as persons without disabilities. This *Policy Research Brief* investigates the relationship of residential setting and individual outcomes for people with intellectual and developmental disabilities who use public programs by analyzing the findings of all peer reviewed studies using the National Core Indictors, a state system-level performance and outcome research program. Findings show that, overall, people living in smaller settings, such as their own home, a family or foster home, or small agency home experienced better individual outcomes than those living in larger settings. This brief displays those findings using an array of online, interactive visual features. A PDF version of each section of the brief is available from a link at the end of the relevant Web page. (Publication Date: July 01, 2014)

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

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

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

Implementation of Consumer-Directed Services for Persons With Intellectual or Developmental Disabilities - A National Study (January 2009)

A brief summarizing the results of a national study on the status of consumer-directed services for persons with intellectual or developmental disabilities. The study was conducted at the University of Minnesota's Research and Training Center on Community Living and Syracuse University's Center on Human Policy, and its purpose was to investigate how consumer control is being implemented across states. Additional themes included the exploration of strategies, challenges, and best practices of consumer-directed services and supports. Information was gathered through interviews with administrators of developmental disabilities services in 42 states. The content is based on the comprehensive study entitled: "Implementation of Consumer-Directed Services: A National Study." (Publication Date: January 01, 2009)

Staff: Amy S Hewitt, Pamela M Walker, Sheryl A Larson, Jennifer A Hall-Lande

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

Other Voices: The Minnesota Region 10 Quality Assurance Process (2008)

A documentary video describing how stakeholders in southeastern Minnesota, including parents, advocates, and self-advocates, developed an alternative quality assurance process to better respond to the needs of citizens with developmental disabilities. The system they developed, called VOICE, is a person-driven process that emphasizes self-determination and includes participation by community members, people with disabilities, and professionals in determining the quality of services provided. (Publication Date: January 01, 2008)

Staff: Jerry W Smith

We Get It Done: Working as a Direct Support Professional (2007)

A video about and for Direct Support Professionals (DSPs) -- service professionals entrusted with the immense responsibility of assisting people with intellectual and other developmental disabilities to live rich and fulfilling lives. The expectations of DSPs are demanding, complex, and always evolving. *We Get it Done: Working as a Direct Support Professional* clearly illustrates this everyday work for New Yorkers in a variety of residential and vocational settings and provides first-person stories and advice from real DSPs. Produced by RTC Media for the New York State Association of Community and Residential Agencies. (Publication Date: January 15, 2007)

Staff: Jerry W 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

Costs and Outcomes of Community Services for Persons with Intellectual and Developmental Disabilities (May 2004)

A brief reviewing available research on the costs and outcomes of community service provision for people with intellectual disabilities (or "mental retardation") and developmental disabilities, with a particular emphasis on residential services. It focuses on a number of key issues related not only to public expenditures, but also to funding systems, related policies and regulations, and their impact on service systems, on specific service types, and on service users. (Publication Date: May 01, 2004)

Staff: Vicki D Gaylord, Roger Stancliffe

Direct Support Professional Recruitment Toolkit (2004)

A resource helping human service employers recruit and retain quality Direct Support Professionals (DSPs). This resource provides tools to create an exciting, dynamic recruitment plan, resulting in a large pool of qualified applicants. The toolkit, which may be used by agencies, individuals, families, consortia, and organizations, provides: * Information on how to develop a marketing strategy and recruitment plan that meets each employer's unique needs. * Information on where to find people who make great DSPs. * Samples of effective recruitment tools designed to reach target niche groups. * A CD-ROM (PC/Mac) with templates that can be customized to produce professional, eye-catching materials. (Publication Date: January 01, 2004)

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

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