Status and Trends in Indicators of Community Inclusion: National Data and Evolving Federal Policy

Monday, July 23
3:30 PM - 5:00 PM
Location: Grand Ballroom D

The Administration on Intellectual and Developmental Disabilities supports three longitudinal data collection Projects of National Significance: State of the States in Intellectual and Developmental Disabilities, The Residential Information Systems Project, and Access to Integrated Employment. These projects support the development of national and state policy that enhance the independence, productivity, inclusion, and integration of people with IDD through providing policymakers, service providers, individuals with IDD and their families with high-level evaluation of longitudinal data. In this session, each project will share most recent data, and discuss the implications for policy implementation at the state and provider levels.

Status and Trends in Financing Supports and Services for People with IDD
Financial and programmatic spending on long-term supports and services are compelling indicators of the strength of a nation's investment in the inclusion of people with IDD in their communities. The State of the States in Intellectual and Developmental Disabilities Project analyzes nearly 40 years' worth of national and state financial investments in IDD services and supports, offering a comparative nationwide longitudinal look at financial and programmatic trends in institutional and community-based services for people with IDD in the US. This data reveals longitudinal impacts of federal and state fiscal policies on innovations in the support and services system in the states and nation. In this session we will present 2017 data collection results and discuss emerging financial and programmatic trends in the current political climate.

Status and Trends in In-Home and Residential Supports for People with IDD
As we reaffirm diversity and inclusion, supporting choices in where to live and with whom matters more than ever. The Residential Information Systems Project (RISP) has tracked the transformation of residential services for people with IDD across the United States since 1977. Annual reports document the shift from institutional care to home and community-based services, compare living arrangements and Medicaid expenditures for adults and children, and describe changes in the size and type of residential service settings. This session will explore how RISP data can be used to monitor the impact of policy changes such as the 2014 Medicaid Waiver settings rule and describe ways participants can use RISP data as an advocacy tool.

Status and Trends in Employment Services and Outcomes for People with IDD
With an increasing federal policy emphasis on integrated employment and community life engagement, the nation is poised to put Americans with disabilities on a path out of poverty and towards self-sufficiency. For over 30 years, the Institute for Community Inclusion has been home to Access to Integrated Employment, a national data-collection project on day and employment services and outcomes. This session will describe the nature of day and employment services for individuals with IDD, sharing findings from state IDD agencies, vocational rehabilitation, and the American Community Survey. Implications for implementation of the HCBS Settings Rule and WIOA will be addressed.

John Butterworth

Director of Employment Systems Change and Evaluation
Institute for Community Inclusion, University of Massachusetts Boston

John has over 35 years of experience in research, training, employment support and the management and development of employment services. He manages projects on employment support and state systems change including the Rehabilitation Research and Training Center on Advancing Employment for Individuals with Intellectual and Developmental Disabilities, and the State Employment Leadership Network.


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Amie Lulinski

Research and Development Coordinator
Coleman Institute for Cognitive Disabilities, University of CO

Amie has worked with and for individuals who have I/DD and their families since 1995 when she began her career as a Direct Support Professional. Since then, Amie has served in various roles in Illinois, Missouri, and the Washington, DC metropolitan area ranging from Individual Service Coordinator to Director of Research and Evaluation at The Arc. Amie is currently serving as Research and Development Coordinator at the Coleman Institute for Cognitive Disabilities at the University of Colorado where her work focuses on the State of the States in Intellectual and Developmental Disabilities Project. Amie served as the 2011 Disability Policy Fellow at the Association of University Centers for Excellence and received her PhD in Disability Studies in 2014 from University of Illinois at Chicago, Department of Disability and Human Development, where she is an Adjunct Assistant Research Professor.


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Lynda Lahti Anderson

Researcher V
Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota

Lynda Lahti Anderson is a researcher at the University of Minnesota. Her primary interests are supporting families, health and health disparities. Her professional experience includes providing residential supports and care coordination (case management) for adults with I/DD. She is the parent of a child with Tourette's Syndrome and a caregiver for family members with intellectual disabilities and brain injuries.


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Status and Trends in Indicators of Community Inclusion: National Data and Evolving Federal Policy


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