The committee did not discuss in any detail the levels of funding likely to be needed for such an R&D program. The funding levels from the Agency for Health Care Policy and Research for a single Patient Outcomes Research Team (PORT) project may be instructive on this point, as PORTs contain conceptual, data collection, and analysis components similar to those of the main demonstration and evaluation projects contemplated here. Early PORTs were supported at about $1 million per year for five years. Thus, if a reasonably full set of studies were to be implemented, including a meaningful demonstration and evaluation effort, over a four-year period (beginning in FY 1996 and reporting to Congress in FY 2000), $4 million is a tenable, albeit not generous, estimate.
The committee accepts the conventional wisdom that self-advocacy by consumers is the most desirable solution to many of the problems consumers face. Further, the committee also acknowledges that frail elderly people receiving health care and LTC services, ranging from skilled home health care to various in-home services funded under home- and community-based waivers and state-funded programs, may be vulnerable to neglect, abuse, and poor care. Such consumers of health care and LTC services, especially persons who cannot advocate for themselves when confronted by systems that are complex, fragmented, and cost-conscious, need an independent intermediary and advocate. Such advocates do exist in some places and in some capacities, but they cannot always act expressly on behalf of the consumer, provide both individual and systemic advocacy, nor work preventively.
The 13 states that have expanded ombudsman services to health care and LTC consumers outside of LTC residential facilities have limited experience to date. The committee heard testimony that this is due, in large measure, to inadequate resources to fully implement and operate a viable program. The result, however, is that little empirical evidence is available to support decision making on whether and how the current ombudsman program ought to be expanded.
On the basis of what is already known, however, most committee members believe that some entity or individual—whether or not it is the current LTC ombudsman—is needed to answer questions, to provide systemic advocacy, and to intervene in problem situations for some consumers.
Other activities are in place ostensibly to help address the needs and interests of vulnerable people receiving community-based health care and LTC services. These include: case management programs, the APS efforts available in most states; the home care complaint hotlines mandated by law in 1987, which have been variably implemented across the United States; and licensure,