Federal and state policymakers increasingly speak of the importance of demonstrating the effectiveness (“outcomes”) of public investments in services for persons with disabilities that are funded through HCBS. No longer satisfied with descriptions of money spent, staffing ratios, and movement of people from institutions to the community, they desire more specific information on how well the system is providing services and supports that enable people with disabilities to experience their desired outcomes. Policymakers and funders want outcome information measured in a consistent and accurate manner nationwide. In response to these needs, this year ICI received a five-year grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), U.S. Department of Health and Human Services, to launch ICI’s newest center, the Rehabilitation Research and Training Center on Home and Community Based Services Outcome Measurement (RRTC/OM) . Directed by Brian Abery and Amy Hewitt , RRTC/OM is a partnership of five organizations: ICI’s Research and Training Center on Community Living, the Research and Training Center on Community Living for People with Psychiatric Disabilities at Temple University, the Research and Training Center on Community Living Policy at the University of California San Francisco, The National Council on Aging, and the Ohio Valley Center for Brain Injury Prevention and Rehabilitation at The Ohio State University.

The RRTC/OM is initially looking at the draft framework for HCBS outcome measurement for people with disabilities recently released by the National Quality Forum . It will examine the framework to see whether it captures the perspectives of a wide variety of stakeholders, including people with different types of disabilities who are of different ages and from different cultural groups, as well as their family members, service providers, and policymakers. It will then recommend modifications to ensure the framework reflects what’s truly important to people with disabilities in terms of service outcomes, and engage in five additional studies on various methods of outcome measurement. Ultimately, the work of the RRTC/OM will result in a set of recommended measures and procedures that can be used for collecting data on whether the HCBS-funded programs do what they’re intended to do in supporting desired outcomes for individuals with physical, intellectual, and developmental disabilities; individuals with traumatic brain injury; and adults with age-related disabilities.

This year ICI staff provided over 733,000 participant-hours of training in Minnesota on person-centered thinking, planning, and organizations. The majority of the work was done by its Minnesota DHS Systems Change and Capacity Building Through Research, Training, and Technical Assistance Projects . These projects, co-directed by Rachel Freeman and Amy Hewitt , enhance the statewide capacity to support community living for individuals with intellectual, developmental, and other disabilities and/or mental illness. Funded by the Minnesota Department of Human Services (DHS), this work has as part of its core focus assisting organizations to become person-centered in their supports and services. Toward that end project staff conducted training in person-centered thinking, planning, and organization change for over 2,000 service providers and others throughout Minnesota, including in-depth agency-specific training with seven provider agencies. The training delivered a framework to help agencies discover and support what really matters to people they serve, while ensuring a balance between what people want and what will help them to stay healthy and safe.

In addition, the project launched pilot groups for person-centered organization training focused on Direct Support Professionals (DSPs); that training was designed to support DSPs in becoming more person-centered in their day-to-day practices and supports. Also new this year was the first Minnesota Gathering for Person-Centered Practices, organized by the project staff in collaboration with Minnesota Department of Human Services, Minnesota State-Operated Community Services, and provider agencies Owakihi, Lutheran Social Services, STAR Services, Dependable, and Support Development Associates. The gathering, designed for those who are committed to person-centered values and are eager to learn about and share ideas for real implementation and changed practices, was attended by over 170 participants.

The National Residential Information Systems Project (RISP) is a longitudinal study of trends in publicly-funded residential services for individuals with intellectual and developmental disabilities in all 50 states and the U.S. as a whole. Directed by Sherri Larson , RISP—now in its 30th year at ICI—maintains and shares data that is a highly-valued resource for state and federal legislative action, for research, and for policy. It includes analysis of data on setting types, setting sizes, funding authorities, and expenditures for persons with intellectual and developmental disabilities, and is cited by agencies including the U.S. Department of Health and Human Services, National Institutes of Health, and National Association of State Directors of Developmental Disabilities Services.

RISP’s annual national and state-by-state surveys of Medicaid-funded residential and in-home supports, long-term care, and related services for persons with intellectual and developmental disabilities have evolved since the Administration on Community Living, U.S. Department of Health and Human Services began funding it in 1985. Building on surveys from the 1960s-1980s, this year it continued to evolve, adding increased emphasis on family support data, as well as information about the age of those receiving long-term services and supports. It is the longest-standing continuous data collection and analysis effort at ICI.

• Annual National and State-by-State Data Collection on Status and Trends in Medicaid Policy. Sheryl A. Larson
• Certificate in Disability Policy and Services. Amy Hewitt, Beth Fondell
• Changing Landscapes: An Ongoing Exhibit of Artists with Disabilities at ICI. Megan Dushin
• Design Thinking for Foster Care Systems. Angela Novak Amado
• DirectCourse. Amy Hewitt, Susan O’Nell, Kristin Dean, Barbara Kleist
• DSP Workforce Development Program. Barbara Kleist
• Effectiveness of Two Approaches to Expand the Social inclusion of Adults with Intellectual and Developmental Disabilities Living with Families. Angela Novak Amado
• Family Support Research and Training Center (subcontract from University of Illinois at Chicago). Amy Hewitt, Lynda Anderson, Renáta Tichá
• Identifying the Critical Elements Associated with High Fidelity Adoption of Programs that Support and Enhance the Quality of Life for Persons with Intellectual and Developmental Disabilities. Brian Abery
• Minnesota DHS Systems Change and Capacity Building Through Research, Training, and Technical Assistance Projects. Rachel Freeman, Amy Hewitt
• Multi-Site Study of Employment Interventions. Kelly Nye-Lengerman
• National Core Indicators: Advance Exploration of Factors Affecting Quality of Life Outcomes of Adults with Intellectual Disabilities. Renáta Tichá
• National Residential Information Systems Project (RISP). Sheryl A. Larson
• New York DSP Credentialing Program Implementation Study. Amy Hewitt

• Partnership in Wellness: A Training Curriculum for Adults with Intellectual and Developmental Disabilities. Lynda Anderson, Sheryl A. Larson
• PROMISE Technical Assistance Center. Kelly Nye-Lengerman
• Putting Faith to Work. Kelly Nye-Lengerman, Joe Timmons, Angela Novak Amado
• QualityMall.Org Web Site on Person-Centered Services for Persons with Developmental Disabilities. Angela Novak Amado, John Smith
• Reinventing Quality: Biennial Conference on Person-Centered Supports. Amy Hewitt, Angela Novak Amado
• Research and Training Center on Community Living (RTC/CL) (an ICI Center). Amy Hewitt
• Research and Training Center on HCBS Outcome Measurement (RTC/OM) (an ICI Center). Brian Abery, Amy Hewitt, Renáta Tichá
• RRTC on Employment – Think Work (subcontract from Institute for Community Inclusion, University of Massachusetts Boston). Kelly Nye-Lengerman
• Self-Advocacy Online: Research and Development to Bridge the Digital Divide. Jerry Smith
• Supporting Individuals and Families Information Systems Project (FISP). Lynda Anderson, Sheryl A. Larson
• Supporting the Self-Determination of Adults and Transition-Age Youth Within the Family Context. Brian Abery, Renáta Tichá
• The Normalization Principle and Wolf Wolfensberger Video Project. Jerry Smith
• Validity and Source Reliability of Selected Background Section Items of the NCI Adult Consumer Survey Across Data Sources and States. Renáta Tichá