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
with disabilities.
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.