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Center of Excellence for Disability Research

Overview

In May 2010, the U.S. Department of Health and Human Services Office on Disability awarded Mathematica Policy Research, Inc. $7 million to establish a Center of Excellence for Disability Research. This two-year project, funded under the American Recovery and Reinvestment Act of 2009, is creating a foundation and data infrastructure to support comparative effectiveness research on care for adults with disabilities. Findings will be disseminated to adults with disabilities, their caregivers and family members, providers of long-term support services to this population, policy makers, and researchers.

Like all Americans, adults with disabilities seek affordable and effective care that maximizes their well-being and independence. The Center is organized to support that goal: we are collaborating with stakeholders in the health care and disability communities to ensure that our work is relevant and practical. The Center’s research findings and publications will help consumers, family members, other caregivers, providers, and policymakers identify effective strategies for promoting and maintaining the health and quality of life of individuals with disabilities. Building a strong data infrastructure will allow researchers to address complex questions about the effectiveness of alternative ways of delivering long term support services and coordinating these services with medical services.

Mission

To build a research foundation and data infrastructure for ongoing rigorous, informative and practical research concerning care models and specific interventions that improve the quality of care and quality of life for adults with disabilities.

Goals

Identify, assess, and disseminate the evidence on which services and care models work best for individuals with disabilities.

Create databases and effectiveness criteria to support new comparative effectiveness research on issues of high priority to the disability field.

Provide practical information to consumers and their families, care providers, and policymakers on the implications of the findings for care.

Major Activities

Create, develop, and continually improve the Center to motivate greater demand for and use of comparative effectiveness research.

Conduct systematic reviews of existing program effectiveness and comparative effectiveness research studies on disability, synthesize major findings and implications, identify key gaps and priorities for future comparative effectiveness research, and develop criteria for measuring effectiveness.

Strengthen the data infrastructure for conducting comparative effectiveness research through carefully planned and executed enhancements to the Chronic Conditions Data Warehouse, and assessment and standardization of state Medicaid data through pilot projects.

The activities of the Center are expected to yield relevant findings that can be used to support meaningful community living for people with disabilities and complement the work carried on under the Community Living Initiative lead by the Office on Disability.

Our Partners

Through its Chronic Conditions Data Warehouse, the Centers for Medicare and Medicaid Services are a critical partner in this project. The Chronic Conditions Data Warehouse contains existing Medicare beneficiary data from multiple data sources linked by a unique identifier, allowing researchers to analyze information across the continuum of care. The intended use of the data is to identify areas for improving the quality of care provided to chronically ill Medicare beneficiaries, reduce program spending, and make current Medicare data more readily available to researchers studying chronic illness in the Medicare population (Buccaneer Computing Systems Services. (2009). Chronic condition data warehouse user manual, Version 1.5, May 2009). For additional information on the warehouse please see http://ccwdata.org/.

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