EMERGING TRENDS

The emerging trends, highlighted below, are expected to continue into the twenty-first century. Advocates can help shape these trends to strengthen caregiving families.

Shift in Long-Term Care from Federal to State Level

Federal cutbacks in Medicaid and limited national health reform have shifted the focus in long-term care from the federal to the state level. Recently, states have been exploring strategies to expand home and community-based services systems. This expansion has slowed, and in some cases reversed, the growth of nursing homes in some states (i.e., Oregon and Washington).⁹³ States have found that home and community-based services cost less per person, on average, than caring for a person in a nursing home.⁹³ Nationally, the number of nursing home residents was up only 4percent between 1985 and 1995, despite an 18 percent increase in the population 65 and older.⁹⁴ Additionally, with the focus on providing a continuum of care, states are increasingly looking at infrastructure issues, particularly consolidating long-term-care programs within one state agency, and seeking Medicaid waivers to provide an array of home and community-based services, including family support.

Consumer-Directed Care

A trend in the delivery of quality and cost-effective home and community-based long-term care is the movement toward consumer-directed services. The concept of consumer direction implies that consumers prefer to make decisions about their service needs and are able to take a more active role in managing their own services. This growing interest in consumer-directed care is an outgrowth of the independent living movement, which was started in the 1970s primarily by younger adults with disabilities⁹⁵ and has now led to a number of new initiatives bridging the aging and disability communities.⁹⁶ The issue of allowing people to manage their own care is controversial at the state level because many states view their traditional care management process as a means for maintaining both quality of services and control over expenditures.⁹³

One such consumer-directed initiative known as cash and counseling was described previously. Another new initiative is Independent Choices: Enhancing Consumer Direction for People with Disabilities. This $3-million grants program is supported by The Robert Wood Johnson Foundation. In June 1997, some thirteen demonstration and research projects were awarded grants to explore various aspects of consumer direction and choice in home and community-based services.⁹⁷ Some disability advocates anticipate consumer choice to be the next civil rights issue.⁹⁸

Managed Care and Consumer Protections

For the foreseeable future, managed care is here to stay. Future emphasis on cost control and coordination will give rise to managed long-term-care plans in Medicare as well as Medicaid.¹ In the present debate, interest at the state level has largely focused on how managed care can contain costs. However, from the consumers perspective, how well managed care coordinates and delivers services and responds to individual and family needs is as important as its ability to contain costs.⁹⁹ Policy issues to be addressed include the following: (1) consumer protections in marketing and enrollment and disenrollment policies; (2) assuring ready access to affordable, appropriate, and quality care; (3) consumer choice of qualified providers in the least restrictive, most appropriate setting that recognizes family needs; and (4) a full range of health and long-term-care services, including access to specialists for individuals whose chronic conditions require such care.

Use of Technology in Delivering Information and Services

Today, with a computer and modem, global choices for obtaining caregiving tips and long-term-care advice are available with a few keystrokes. The recent explosion of technology is transforming the way we gain access to and deliver services. According to Find/SVP Emerging Technologies Research, an estimated 40 to 45 million people in the United States were using the Internet in 1997; that number is projected to more than triple to 150 million Americans by the year 2000. Discussion groups, support groups, counseling, online health information, and caregiving resources are now readily available using computer technology. The proliferation of Web sites in health and long-term care reflects a need for information to help people make more informed choices about their own care and the care of their families. Issues of quality and timely information, as well as concerns about confidentiality, will probably be debated in the coming years.

Next Section: Model State Programs to Support Family Caregivers

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