The National Council on Disability (NCD) has a cooperative agreement
with the Health and Disability Working Group (HDWG) at the Boston University
School of Public Health to research current health care reforms and practices
that promote consumer-oriented and consumer-driven health care for people
The purpose of this research is to identify best-evidence or emerging-evidence practices and to contribute to knowledge about the factors that facilitate or impede the implementation of these practices. The HDWG will gather comprehensive information about:
• Laws and regulations that promote consumer-oriented reforms and practices,
• Current programs and practices that are documented to be effective or show promise but have not yet been well evaluated,
• The extent to which these practices have been implemented, circumstances under which they have been implemented, and populations to which they have been targeted, and
• Factors that affect their replication and dissemination.
Understanding best practices in consumer-directed and consumer-oriented care is not an end in itself, but a means to improve outcomes among individuals with disabilities. In our view, the ultimate goals of this effort are:
• To expand opportunities for independence, social integration, and quality of life for individuals with disabilities, through reduced institutionalization and greater access to flexible supports;
• To maximize autonomy among individuals with disabilities in regard to health and related services; and
• To ensure that systems of care at the federal, state and local levels, include the full range of services to meet the varied needs and preferences of consumers with disabilities.
The primary product of this effort will be a report to NCD containing recommendations regarding steps that could be taken to promote consumer-oriented health care practices. It will include recommendations regarding:
• The enforcement, modification, or expansion of existing laws or regulations that promote consumer-oriented health care or consumer-directed long term care;
• Policies, programs and practices that have been documented as being effective in promoting consumer-oriented health care or consumer-directed long term care that policy-makers might consider funding or promoting;
• Findings concerning potential impact of proposals for restructuring the Medicaid and Medicare programs on uptake of effective strategies; and
• Additional core research issues that need to be addressed.
While this report will focus on effective strategies available to public sector programs, we will also identify consumer-oriented strategies that could be adopted by health plans or other private sector agencies in our report to NCD.
HDWG staff involved in this project are Carol Tobias, M.M.H.S., Deborah Allen, Ph.D., Kate Brown, B.A., Regina Murphy, B.A., Kate Tierney, B.A., and Sarah DuRei, B.A.
National Evaluation and Program Support Center to conduct a multi-site evaluation of outreach activities designed to engage and retain individuals with HIV in medical care. Funded by Health Resources and Services Administration
A national evaluation of peer education training programs for people living with HIV.
A National Center working to advance the Healthy People 2010 objective that all children with special health care needs have access to adequate health insurance and financing for their care.
A cross-disciplinary training curriculum in HIV and substance abuse, designed for health care providers, support service providers and substance abuse treatment providers.