CENTER OF EXCELLENCE IN RESEARCH ON DISABILITY SERVICES CARE COORDINATION AND INTEGRATION
According to Census Bureau data from 2006, 41 million Americans—15 percent of the noninstitutionalized civilian population age 5 or older--had a disability that limited their activities and diminished their quality of life. These individuals face impairments and challenges that vary in their onset and duration, and in their impacts on functioning, health, and secondary conditions. While people with disabilities often interact with the healthcare and social service systems, research has still not answered some basic questions about the most effective services, supports, and clinical care for this population, nor has it identified the best models for coordinating and integrating these community-based services and supports.
Like all Americans, people with disabilities seek affordable, effective care that maximizes their well-being and independence. Advancements in medical sciences have increased life expectancy for people with life-long disabilities. However, unlike other populations, many people with disabilities need services and supports to help them carry out everyday tasks of daily living such as bathing, feeding, or getting around. In addition, some people with disabilities are at risk of institutional placement. Following the Supreme Court’s Olmstead v. LC decision (1999) many more individuals with disabilities are now being cared for in their own homes and communities. Every state provides home and community based services (HCBS) through the Medicaid program to qualified people with disabilities living in the community. These services and supports often include a personal care attendant, homemaker services, or adult day care. The type, amount, availability, and quality of these services, however, are often driven by state eligibility requirements, benefit limits, and local provider availability rather than the need, desire for, effectiveness or value of such services.
Comparative Effectiveness Research
Comparative Effectiveness Research (CER) is based on a premise that a particular service or support or a particular application of a given service or support is more effective than another. Such research has yielded many very important findings in the medical and surgical domains. There may be, however, significant challenges to using the same approach to inform coverage decisions for community-based services and supports, which enable many people with disabilities to live in the community. These challenges arise partly from the difficulty in conducting randomized controlled trials of interventions for long-term care. In addition, purely clinical outcomes do not necessarily reflect some of the most important measures for addressing effectiveness among people with disabilities and/or multiple chronic conditions.
The effectiveness of community-based long-term care services and interventions should be measured in large part by outcomes such as improved quality of life, independence, or a slowed decline in functioning, that is, outcomes that must be assessed through participant experience data and are not included in administrative databases. Effective community-based services and supports may also be dependent on the unique preferences, as well as the social, cultural, and functional circumstances of a person, in addition to strictly clinical criteria. Therefore, evaluating CER services must also take into account the highly variable nature of long-term care needs.
In addition to evaluating the effectiveness of individual services, CER needs to examine service delivery, as well as coordination and integration between services and providers. In some models a nurse helps to coordinate the individuals’ medical and social support needs and services in order to maximize outcomes. Evidence shows that well-designed and implemented care coordination can help persons with disabilities live independently longer, and with added years of quality life. Care coordination /care management may be even more vital for certain populations, such as individuals with multiple chronic conditions and those with higher levels of disability. While many policy makers consider care coordination and integration an essential part of health care for people with disabilities, many aspects of care coordination and integration for this population are not well defined or understood. Researchers and policy makers lack the information they need to assess the impact of services and care coordination on the health, well-being, and quality of care received by people with disabilities. This, in turn, leaves consumers, their families, and care providers without the information they need to improve the lives of people with disabilities.
Purpose of the Center of Excellence in Research on Disability Services, Care Coordination and Integration
To begin to address these needs, the U.S. Department of Health and Human Services Office on Disability awarded Mathematica Policy Research Inc. a $6.3 million contract to establish a Center of Excellence in Research on Disability Services, Care Coordination, and Integration. This two-year project, funded under the American Recovery and Reinvestment Act (ARRA) of 2009, establishes a data infrastructure and guidelines to support and conduct CER on care for persons with disabilities. The Centers for Medicare and Medicaid Services (CMS) is a critical partner in this initiative.
This Center of Excellence provides an unparalleled opportunity to build a data infrastructure to support future research on the effectiveness and comparative effectiveness of various services, supports, and models of care for persons with disabilities. Instead of focusing on existing areas where the literature is mature, such as rehabilitation, as well as behavioral and psycho-social interventions, the Center will broaden the availability of new research on the effectiveness of integrated models of service delivery and develop recommendations to promote expansion of such knowledge in the future. Research dissemination will be a high priority for the Center, with the objective being the production and promotion of studies and findings that provide actionable information on service models to providers, consumers, policymakers, and researchers. The activities of this Center of Excellence 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.
The Office on Disability’s vision for the Center was guided by the work of the Federal Coordinating Council (FCC) on Comparative Effectiveness Research and by the Institute of Medicine, both of which identified disability as a priority area for comparative effectiveness research. Rosaly Correa-de-Araujo, M.D., M.Sc., Ph.D., Deputy Director for the Office on Disability served as a member of the FCC. Dr. Correa-de-Araujo currently serves as the Project Officer and Scientific lead for the initiative.
Specific Activities
The Center of Excellence will conduct several specific, core activities:
- Identify and review existing evidence on which services and care models work best for persons with disabilities and chronic conditions, and how effectiveness varies with their personal characteristics
- Develop and prioritize a set of critical research questions
- Build a data warehouse with linked data sets relevant to disability to facilitate research on these questions
- Establish criteria and standards for assessing the effectiveness of services and models
- Disseminate findings from original research that exemplifies these standards
Subcontractors to the Center include Buccaneer, which will lead database development and maintenance, and New Editions, which will facilitate the project’s technical expert panel meetings and website development.
Additional Information
Additional Information on HHS recovery supported programs:
http://www.hhs.gov/recovery/programs/
Press release for the Center for Excellence announcement:
http://www.hhs.gov/news/press/2010pres/05/20100506a.html
Information regarding the contract award:
https://www.fbo.gov/index?s=opportunity&mode=form&tab=core&id=92e64a6fdf8ae353fdf8265570ac8c85
For additional information on the Center of Excellence, please contact:
Rosaly Correa-de-Araujo, M.D., M.Sc., Ph.D.
Deputy Director
Office on Disability, Office of the Secretary
U.S. Department of Health and Human Services
200 Independence Avenue
Washington, D.C. 20201
Email: rosaly.correa@hhs.gov