Community group residential


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]

In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through 2013 (2016)

A report describing the status of, and trends in, long-term supports and services for people with intellectual or developmental disabilities in the U.S. on June 30, 2013. It is based on an annual nationwide survey of directors of state intellectual and developmental disability agencies and large state residential facilities conducted by the National Residential Information Systems Project (RISP), now in its 30th year at the Research and Training Center on Community Living. The report presents data on individualized and congregate settings, utilization and expenditures for Medicaid's Home and Community-Based Waiver (HCBS) and Medicaid's Intermediate Care Facilities for Individuals with Intellectual Disabilities program, national longitudinal trends in the utilization of and expenditures for long-term services and supports, and services and supports provided in state-operated facilities serving 16 or more people with intellectual and developmental disabilities. The RISP data are available in several formats. The annual reports can be downloaded in [PDF format]( The online version of the latest report contains short reports that highlight specific findings from the overall report; they are available online in an [interactive, data visualization format]( that allows users to quickly access state data and presents comparisons between states in a visual format. (Publication Date: March 08, 2016)

Staff: Libby J Hallas-Muchow, Amy S Hewitt, Sheryl A Larson, Sandra L Pettingell

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 representing an expansion of the data collection activities mandated by a 2012 Administration of Intellectual and Developmental Disabilities (AIDD) Funding Opportunity Announcement (FOA). Prior to 2012, the AIDD funded data projects, Access to Integrated Employment, Family and Individual Information Systems project (FISP), Residential Information Systems Project (RISP) and the State of the States in Developmental Disabilities only collected data from the 50 states and the District of Columbia. The 2012 FOA requested that three of the AIDD data projects work together to include the five U.S. Territories (American Samoa and the Commonwealth of the Northern Marianas Islands, Guam, Puerto Rico and the Virgin Islands) in their data collection and analysis efforts. This summary represents the first step to describe the services for people with intellectual and developmental disabilities and their families in the territories. While the information may have limitations in the comparability to the rest of the nation, AIDD believes that it is important to begin data collection, tracking and analysis to increase opportunities to improve self-determination, independence, productivity, integration and inclusion of people with IDD into their communities in the U.S. Territories. (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

Active Support: People Fully Engaged in Life (2014)

A DVD providing an overview of Active Support -- how it is implemented and the kind of training involved to make it successful. Active Support is an organizational intervention that enables Direct Support Professionals in community settings to effectively support the engagement of persons with intellectual or developmental disabilities (ID/DD) throughout their day and in their communities. The DVD includes a long version (24:12) and short version (5:30) of the program. Both programs are closed captioned. (Publication Date: September 04, 2014)

Staff: Jerry W Smith

Collaborators: University of Sydney [Australia], Deakin University [Australia]

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

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

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, Angela N Amado, Julie E Kramme, John G Smith

Service Use by and Needs of Adults with Functional Limitations or ID/DD in the NHIS-D: Difference by Age, Gender, and Disability (December 2003)

A brief summarizing findings from the National Health Interview Survey on Disability conducted by the U.S. Bureau of the Census, National Center on Health Statistics in 1994 and 1995. It is an extension of the April 2001 MR/DD Data Brief on characteristics of and service use by persons with MR/DD living in their own homes or with family members. This brief re-examines employment services and status, personal supports used and needed, professional and mental health services, previous longterm care services, transportation services, preventative health care, and waiting for services. The new component in this brief is an examination of how service use and needs vary by age (for persons 18-35 years versus persons 36 years and older), gender, and disability group (persons with intellectual and/or developmental disabilities [ID/DD] versus persons with one or more substantial functional limitations who do not meet the criteria of having ID/DD). It uses a series of logistic regressions to examine how the services and support needs vary by age, gender, and disability group after controlling for overall health status, race, and economic status. (Publication Date: December 01, 2003)

Staff: Sheryl A Larson

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