Consumer-Directed Health Care: How Well Does It Work?

October 26, 2004

National Press Club
Washington, DC
Presentation by Carol Novak, Member
National Council on Disability

Introduction
America’s system of health care has traditionally provided few options for consumer direction or control. Recently, health policy shifts and practice changes have explored consumer-directed health care. For example, federal and state governments and advocates have combined over the past ten years to explore the use of consumer-directed home and community-based health care, long-term personal assistance services, and telemedicine and telerehabilitation. Most recently, the Olmstead Supreme Court decision has provoked a wave of institution-to-community planning among states that are responsible for ensuring that Medicaid recipients are provided health care in the most integrated setting appropriate.

Overview
NCD evaluated relevant policies to identify best evidence or emerging practices in consumer-directed health care for people with disabilities. This report brings together what is known about those policies and the outcomes of those practices. It presumes that better understanding of best practices will lead to the adoption of policies and practices for people with disabilities that

• Expand opportunities for independence, social integration, and quality of life;


• Maximize autonomy among consumers in regard to health and related services; and


• Ensure that systems offer a range of services to meet the varied needs and preferences of consumers.

Methods
NCD’s research includes a systematic review of the literature on consumer-directed care. It was shaped by guidance from a Consumer Advisory Board (CAB) and refined thru interviews with dozens of key informants. It addresses four questions:

1. What form does consumer direction take?
2. Does consumer preference for consumer-directed care differ by age, gender, race, or other sociodemographic factors?
3. What outcomes are associated with consumer-directed care?
4. Are consumer-directed models of care cost-effective?

Definition
The term “consumer-directed care” has its roots in the independent living movement, is used in reference to home- and community-based long-term care and support services, and emphasizes the ability of people with disabilities to assess their own needs and make choices about what services would best meet those needs. It is important to note that “consumer-directed,” as used in this report, should not be confused with the current insurance industry use of the terms “consumer-directed” to refer to private health insurance characterized by high deductibles and low premiums.

Outcomes
Outcomes were defined by the research team in collaboration with the CAB to include: Consumer satisfaction, changes in health status and functional ability, consumer control, consumer choice, consumer participation and education, quality of life, self-esteem, employment and continuity of work, changes in emergency room and hospital utilization, changes in homelessness, provider sensitivity and cultural competence, and cost-effectiveness.

Findings
The best studied examples of consumer direction have been in the area of long-term care, where consumer control of resources and direction of caregivers has been tested as an alternative to agency-directed community care.

While virtually all consumers express a preference for community-based care, interest in consumer-directed or -oriented health care models varies. For example, younger individuals seem to be more interested in consumer direction than older individuals, and, different preferences among race/ethnicity groups.

Although most implementation and evaluation of consumer direction have occurred in long-term care, consumer-oriented approaches are evident in other contexts as well (e.g., managed care programs, community-based care for children with health care needs).

Studies of consumer direction indicate: positive outcomes in terms of consumer satisfaction, quality of life, and perceived empowerment; no evidence that consumer direction compromises safety; and, strong preference for consumer direction and satisfaction with their services.

Variations in study design lead to conflicting results on the issue of cost-effectiveness.

Recommendations
NCD offers the following key recommendations.

Policy and Program Recommendations
Establish a locus of responsibility for programs and services within the federal government related to the health and well-being of individuals with disabilities.

Incorporate opportunities for choice wherever possible, even in institutional settings.

Do not advance choice at the expense of quality or accountability. The right of consumers to choose among service options does not absolve agencies of responsibility for ensuring access and quality.

Do not build expectations of cost savings into the start-up of consumer-directed or -oriented health care. Start-up of program models may lead to increased costs in the early days of programs that may result in long-term efficiencies, savings, or cost neutrality.

Programs should be designed to serve people across the disability spectrum, with the flexibility to accommodate a range of individual needs.

Research Recommendations
Create a national stakeholder group to define critical terms (e.g., consumer-directed, disability, satisfaction, personal care assistance,” and “choice” ) in federally-funded research on consumer-direction to promote comparability across and clarity within individual studies.

Develop protocols for federally funded evaluation studies. Guidelines are needed for the design of federal research and evaluation studies in this field.

Include measures of quality of life among outcomes studied in program evaluation. Satisfaction with services may not capture the full impact of consumer direction.

Include measures of mental health in evaluation studies on consumer-directed care.

Include individuals with primary mental health diagnoses in evaluation studies.

Strengthen the efforts of the nation’s consumer-directed research to include a stronger focus on family, particularly in their role(s) in the planning, management, and delivery of services and supports sustaining consumer-directed efforts.

Conclusions
This report aims to inform policy discussions among policymakers, practitioners, researchers, consumers, and advocates for health reform. The report examines current laws; program and policy trends in financing; outcomes; implementation of models; barriers to and facilitators of consumer-direction; the role of federal agencies; and, recommendations for improvements.

NCD’s recommendations imply a major shift: (a) in the way government, private agencies, and consumer organizations think about organizing, locating, and managing health care for people with disabilities; (b) away from a narrow diagnosis-focused approach with a limited range of service options to a cross-disability, lifespan approach in which funds are available to meet individual needs; (c) in the role of government from oversight of tightly defined program options to a broader responsibility for - ongoing assessments of consumer needs, resources that are directed to fill gaps in the service continuum, and programs which meet rigorous evaluation standards for consumer-defined outcomes.