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Consumer-Directed Health Care:
How Well Does It Work?
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax
Lex Frieden, Chairperson
October 26, 2004
This report is also available in alternative formats
and on NCD’s award-winning Web site (http://www.ncd.gov/).
The views contained in the report do not necessarily
represent those of the administration, as this and all NCD reports
are not subject to the A-19 executive branch review process.
October 26, 2004
The President
The White House
Washington, D.C. 20500
Dear Mr. President:
The National Council on Disability (NCD) is pleased
to submit to you this report, titled Consumer-Directed Health Care:
How Well Does It Work? Under its congressional mandate, NCD is charged
with the responsibility to gather information on the implementation,
effectiveness, and impact of federal laws, policies, programs, and
initiatives that affect 54 million Americans with disabilities.
In 2003, NCD decided that it was time to evaluate the evidence base
for the nation’s consumer-directed health care efforts. NCD
determined that it was necessary to assess the nature, scope, and
quality of consumer-directed health reform efforts, to the extent
that federal and state policymakers rely on the outcomes of consumer-directed
health reform efforts for the direction such outcomes imply for
future federal health care reform efforts.
Federal and state governments and advocates have worked
together over the past 20 years to explore the use of consumer-directed
home and community services and long-term personal assistance services.
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. Your Administration
has included consumer-direction as a pillar of its legislative and
program-based initiatives.
This report is a unique piece of policy research cutting
across multiple departments and entities of federal and state governments.
NCD’s research offers a clear picture of the strengths and
weaknesses of our Federal Government’s current research agenda
related to consumer-directed health care for Americans with disabilities.
It sheds light on the relationship between consumer-directed health
care and practice. And it provides a basis for policymakers who
use health research evidence to inform their policy decisions (e.g.,
about MiCASSA, Money Follows the Person, Olmstead, and Real Choice
Systems Change Grants) in keeping with the intent of your Administration’s
New Freedom Initiative (NFI).
In support of the NFI and of progress in the implementation
of consumer-direction policy initiatives, I pledge our support to
your Administration’s commitment to ensuring that equality
of opportunity, full participation, independent living, and economic
self-sufficiency become realities in the lives of Americans with
disabilities. Under your leadership, I remain confident that we
can continue to build an America where all citizens live healthy,
independent lives in the community of their choice.
Sincerely,
Lex Frieden
Chairperson
(The same letter of transmittal was sent to the President
Pro Tempore of the U.S. Senate and the Speaker of the U.S. House
of Representatives.)
National Council on Disability Members
and Staff
Members
Lex Frieden, Chairperson, Texas
Patricia Pound, First Vice Chairperson, Texas
Glenn Anderson, Ph.D., Second Vice Chairperson, Arkansas
Milton Aponte, J.D., Florida
Robert R. Davila, Ph.D., New York
Barbara Gillcrist, New Mexico
Graham Hill, Virginia
Joel I. Kahn, Ph.D., Ohio
Young Woo Kang, Ph.D., Indiana
Kathleen Martinez, California
Carol Novak, Florida
Anne M. Rader, New York
Marco Rodriguez, California
David Wenzel, Pennsylvania
Linda Wetters, Ohio
Staff
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Allan W. Holland, Chief Financial Officer
Julie Carroll, Attorney Advisor
Joan M. Durocher, Attorney Advisor
Martin Gould, Ed.D., Senior Research Specialist
Geraldine Drake Hawkins, Ph.D., Program Analyst
Pamela O’Leary, Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
Acknowledgments
The National Council on Disability (NCD) expresses its deep appreciation
to Carol Tobias, Kate Brown, Debby Allen, Kate Tierney, Regina Murphy,
and Sarah DuRei at the Health and Disability Working Group, School
of Public Health, Boston University, for their assistance in drafting
this seminal report.
Contents
I. Executive Summary
II. Introduction
III. Legal and Regulatory Framework
for Consumer Direction
IV. Program and Policy Trends
V. Outcomes of Consumer-Directed
Health Care
VI. Lessons Learned About
Implementing Effective Reforms and Strategies
VII. The Role of Federal
Agencies in Promoting Research
VIII. Recommendations to Policymakers
IX. References
List of Appendices
Appendix A. Consumer-Oriented Health Care Advisory
Board
Appendix B. Roles and Responsibilities
of the Consumer Advisory Board on Consumer-Oriented Health Care
Appendix C.1. NCD National Consumer
Advisory Board Meeting Minutes, June 30, 2003
Appendix C.2. NCD National Consumer
Advisory Board Meeting Minutes, November 14, 2003
Appendix C.3. NCD National Consumer
Advisory Board Meeting Minutes, March 17, 2004
Appendix D.1. Outcomes Literature
Review Protocol
Appendix D.2. Policy Study Protocol
Appendix E. Consumer-Oriented
Managed Care Outcomes
Appendix F. Key Informant List
Appendix G.1. Consumer-Directed
and Consumer-Oriented Health Care for People with Disabilities
Appendix G.2. Consumer-Directed
and Consumer-Oriented Health Care for People with Disabilities
Appendix H. Federal Legislation
Intended to Serve Persons with Disabilities
Appendix I. Overview of Laws
and Legislative Initiatives
Appendix J. Medicaid Managed
Care Policy Trends and Program Descriptions
Appendix K. Summary of Preference
Study Similarities and Differences
Appendix L. Summary of Long-Term
Care Outcome Study Similarities and Differences
Appendix M. Key Informants’
Responses to Research Priorities
Appendix N. Mission of the National
Council on Disability
I.
Executive
Summary
Need
for a Study of Consumer-Directed Health Care
The past 30 years have seen a revolution in
the way disability is addressed in American society. While that
revolution has found expression in most social domains, health care
has lagged behind. America’s system of health care has traditionally
maintained an institutional bias and typically insisted that services
and care be directed by health care professionals, with 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, typically the individual’s home and community.
Literature in the field of consumer-directed health
care is limited. Many of the programs that test innovative models
are too small to yield definitive data, and programs differ sufficiently
from site to site, making meta-analysis challenging. Neither funding
nor leadership has been directed to the full-scale, multifaceted
evaluation required to teach us what we would like to know about
consumer-directed and -oriented care for people with disabilities.
Despite these limits in research, findings show that enough has
been learned to support important changes in the way we plan, implement,
and pay for the long-term care of individuals with disabilities.
This study includes a systematic review of
the literature (both print and Web-based) on consumer-directed and
-oriented care. It was shaped by guidance from a national consumer
advisory board and refined based on interviews with key informants
in relevant fields of research, policy, and program administration.
The study addresses four critical questions:
- What form does consumer direction and orientation
take in health and related services, and to what extent have different
models been studied?
- Does consumer preference for consumer-directed
or -oriented health care differ by age, gender, race, or other
sociodemographic factors?
- What outcomes are associated with consumer-directed
and consumer-oriented care? Do reforms improve health status,
quality of life, or other parameters for individuals with disabilities?
Or do they, to the contrary, pose risks to the safety or well-being
of consumers?
- Are consumer-directed and -oriented models of care
cost-effective?
What
NCD Found
- 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. Younger individuals seem to be more
interested in consumer direction than older individuals, and there
appear to be different preferences among race/ethnicity groups.
However, sufficient local variability in preferences by race/ethnicity
suggests a need for caution in generalizing these results. The
type and severity of disability do not seem to determine individuals’
preferences regarding care: interest in consumer direction is
evident across a range of disabilities and ages.
- Although most implementation and evaluation of
consumer direction have occurred in long-term care, consumer-oriented
approaches are evident in other contexts as well. While the focus
of this report is on long-term care, it is important to acknowledge
emerging models in other areas. Appendix J looks at managed care
programs that promote consumer/provider partnerships around direction
of care and use of resources. We note also that implementation
of medical homes for children with special health care needs and
mental health parity have promoted a new emphasis on consumer-oriented,
community-based care for children with special health care needs
and individuals with mental health diagnoses.
- Studies of consumer direction indicate positive
outcomes in terms of consumer satisfaction, quality of life, and
perceived empowerment. There is no evidence that consumer direction
compromises safety—in fact, the opposite appears to be true.
Individuals who have participated in consumer-directed systems
express strong preference for consumer direction and satisfaction
with their care.
- Variations in study design lead to conflicting
results on the issue of cost-effectiveness. For example, (a) some
research documents consumer-directed care as more cost-effective
than agency-directed care and community-based care as more cost-effective
than institutional care; (b) some studies do not account for the
potential cost of services authorized by agency providers that
were not, in fact, delivered to consumers owing to personnel shortages,
while other studies vary in their treatment of out-of-pocket expenditures
or uncompensated care provided by families; and (c) some study
designs try to predict the likelihood that particular individuals
would, in fact, be institutionalized without community-based services,
while others do not.
Recommendations
NCD’s recommendations reflect the research
findings reported above. They also reflect a review of the policy
literature concerning barriers and facilitators to consumer-directed
care and the comments of consumer advisors and other key informants
who helped the study team synthesize and interpret the research
direction and findings. Because sound program and policy decisions
depend on the development of a deeper knowledge base than is now
available, the recommendations address research as well as program
design and direction. One overarching recommendation, which touches
on both the conduct of research and the design of services, is applicable
to a wide range of government agencies—those that play an
explicit role in disability policies or programs (e.g., the Social
Security Office of Disability Determinations, the Administration
on Developmental Disabilities) and those that have an impact on
disability even though it is not their focus (e.g., the Administration
on Aging, the Food and Nutrition Service Food Stamp Program)—and
private sector organizations. It calls for a change in the way business
is conducted by funders, policymakers, and researchers in this field:
Consumers representing a wide range of disability
perspectives should be included in decisionmaking at every step
in the process that ultimately shapes programs: from development
and implementation of a research agenda through policymaking to
program design, oversight, and evaluation. Consumers provide a truly
unique source of information about the human services and health
care delivery system.
The recommendations presented briefly below can each
stand alone—it is possible to implement one and reject others.
But they also reflect a coherent overall approach to the design
and implementation of consumer-directed or -oriented health care
programs for people with disabilities. The following are key elements
of this approach:
- Services need to be individualized, with consumers offered
as much flexibility and choice as is feasible in relation to a
given type of care.
- Services should, wherever possible, be designed to serve individuals
with a broad range of disabilities. This flexibility will yield
more individualized and therefore better services for individuals
within, as well as across, disability groups.
- To achieve flexibility and accommodate diversity, consumers
with different experiences and perspectives must be included at
all stages of program design, implementation, and evaluation.
The achievement of these recommendations requires
the designation or establishment of oversight authority within the
federal government to coordinate and achieve their inherent goals.
Policy
and Program Recommendations
A. Establish a locus of responsibility
for programs and services within the federal government related
to the health and well-being of individuals with disabilities.
The market has not, on its own, created the continuum of services
required to meet consumer needs: health care personnel is one example.
We do not need a new clearinghouse or committee; this is a call
for assigning a federal agency programmatic responsibility in the
area of health and well-being of individuals across the spectrum
of disability. This focal point exists for children with special
health care needs in the Maternal and Child Health Bureau of the
Health Resources and Services Administration, but does not exist
for adults with disabilities.
B. Make response to critical personnel
shortages a first order of business for this newly identified
unit of government. The agency should address recruitment,
training, and supervision of personnel to supply labor adequately
and responsibly for community-based and consumer-directed care
options.
C. Incorporate opportunities for choice
wherever possible, even in institutional settings. Both
studies and interviews indicate that best outcomes occur when
consumers can make their own choices among services options. Even
in nursing homes and other institutional settings, there is room
for choice about activities and services.
D. Do not advance choice at the expense
of quality or accountability. The option to participate
in a consumer-directed program should not be traded off against
accountability for entitlement programs. The right of consumers
to choose among service options does not absolve agencies of responsibility
for ensuring access and quality.
E. Do not build expectations of cost savings
into the start-up of consumer-directed or -oriented health care.
While cost-effectiveness is always important in publicly funded
programs, start-up of new or modified program models may lead
to increased costs in the early days of programs that may result
in long-term efficiencies, savings, or cost neutrality.
F. Break down barriers and create opportunities
for cross-fertilization between narrow and arbitrarily defined
disability sectors. While groups may differ in the nature
and extent of their service needs, program models targeted to
one group may be quite relevant for another. New programs should
be designed to serve people across the disability spectrum, but
with the flexibility to accommodate a range of individual needs.
Here again, there are reasonable
arguments for assigning the coordinating role to a variety of different
agencies. After exploring the options, NCD recommends assigning
the role to the Health Resources and Services Administration (HRSA)
in the Department of Health and Human Services. In part, that choice
reflects the agency’s experience in looking broadly at the
impact of health programs and policies on the overall well-being
of other vulnerable populations. NCD also notes that although HRSA
plays a central role in targeted health care improvement efforts,
it does not administer any of the major health care entitlement
programs. NCD views that as an advantage in relation to the coordination
of health and disability services, since it reduces potential concerns
about conflict of interest on initiatives that might draw on resources
of an entitlement program to reduce overall system costs.
Research
Recommendations
A. Create a national stakeholder group
to define critical terms in research on consumer-directed and
-oriented care, at least for purposes of federally funded research.
Such terms as “consumer-oriented,” “consumer-directed,”
“disability,” “satisfaction,” “personal
care assistance,” and “choice” should be defined,
making it possible for researchers to tailor studies to particular
interventions while promoting comparability across and clarity
within individual studies.
B. Identify a menu of indicators for each
term defined. This is a critical second step toward ensuring
a coherent body of research to inform practice.
C. Develop protocols for federally funded
evaluation studies. Given clear definitions and meaningful
indicators, guidelines are needed for the design of research and
evaluation studies in this field. In the area of cost, for example,
federally funded programs should require that costs to consumers,
as well as costs to government and other institutional payers,
be taken into account in measuring cost or cost-effectiveness
of different program models. The overwhelming role of families
and individuals in paying for long-term care and the risk of cost-shifting
to families as care moves out of institutional and into community
settings makes it particularly critical that research in evaluating
costs follow well-defined guidelines.
D. Include measures of quality of life
among outcomes studied in program evaluation. Satisfaction
with services may not capture the full impact of consumer direction.
If agency-directed services are the only alternative to institutionalization
in a community, there could be a ceiling effect, making it impossible
to distinguish between satisfaction with any community living
option (as compared with institutionalization) and further satisfaction
due to a greater degree of control over those services. Consumers
should be involved in a process to develop meaningful quality
of life indicators.
E. Include measures of mental health in
evaluation studies on consumer-directed care. We found
no studies that looked at the mental health of clients as an outcome
of consumer-directed care. Given the important impact of depression
on overall health and well-being and the significant cost of depression
treatment, this is a critical gap in current knowledge.
F. Include individuals with primary mental
health diagnoses in evaluation studies. We found not
a single study that looked at the impact of consumer-directed
care on individuals with mental illness. There is no theoretical
justification for this omission. It is essential to assess the
potential of consumer direction in improving quality of life among
individuals with mental illness.
G. Strengthen the efforts of the nation’s
consumer-directed research to include a stronger focus on family.
Federal agencies’ research efforts must recognize America’s
families, not only in the role of caregivers but also in the planning,
management, and delivery of services and supports sustaining consumer-directed
efforts to empower individuals with disabilities to achieve their
potential and enjoy the fruits of their civil rights like any
able-bodied citizens.
A reasonable case might be made for any of several
agencies to serve as the central coordinating point for research
on disability and health. Our recommendation, based on review of
current missions, research efforts, and staffing, is that this role
be assigned to the Office of the Assistant Secretary for Planning
and Evaluation (ASPE) within the Department of Health and Human
Services.
Conclusions
Taken as a whole, these recommendations imply a major
shift in the way government, private agencies, and even to some
extent consumer organizations think about organizing and locating,
and managing health care for people with disabilities. They imply
a movement 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.
They imply a shift in the role of government from oversight of tightly
defined program options to a broader responsibility for ensuring
that a set of definitions and protocols are available to support
the development of a knowledge base in this area, that those tools
are used to assess consumer needs on an ongoing basis across disability
groups and age categories, that resources are directed to fill gaps
in the service continuum, and that programs meet rigorous evaluation
standards for consumer-defined outcomes in domains that include
not only direct satisfaction with services but also quality of life,
health, mental health, and function.
II.
Introduction
A. Background
NCD decided to evaluate relevant policies and to
identify best evidence or emerging evidence practices in consumer-directed
and consumer-oriented health care for people with disabilities.
This report brings together what is known about those policies and
the outcomes of those practices, as well as the factors that facilitate
or impede their implementation. It presumes that better understanding
of best practices will lead to the adoption of policies and practices
that
- Expand opportunities for independence, social integration,
and quality of life for individuals with disabilities through
reduced institutionalization and greater access to flexible supports;
- Maximize autonomy among individuals with disabilities
in regard to health and related services; and
Ensure that systems of care at federal, state,
and local levels offer a full range of services to meet the varied
needs and preferences of consumers with disabilities.
B. Methods
Information in this report was derived from the input
of a Consumer Advisory Board (CAB), a review of the published and
unpublished literature, and interviews with key informants and experts
in the field. These methods were used interactively and iteratively
in several phases of the project. The CAB was established to ensure
diverse consumer input into research design, interpretation of findings,
and formulation of recommendations. Eleven individuals who are disability
leaders and/or parents of children with disabilities, and who represent
a broad range of disability, racial, ethnic, geographic, and age
groups, participated in the CAB via conference calls and e-mail
discussions. Please see Appendix A for a list of CAB participants,
Appendix B for a list of CAB roles and responsibilities, and Appendix
C for minutes of CAB conference calls. Views of individual CAB members
were solicited through key informant interviews.
The literature review included peer-reviewed journal
articles, government-funded reports, foundation-funded reports,
and Web site documents. Web sources included Medline, PubMed, Lexis/Nexis,
Ovid, and Biomed Central. In addition to searching databases, we
conducted an Internet search of materials from more than 120 organizations
that conduct work in the arena of consumer-directed care. We reviewed
these publications for relevant policy and outcomes analyses. The
tools developed to guide this review process are included in Appendix
D.
We found 32 outcome studies through the literature
review that met our inclusion criteria for discussion in this report
(see Section V for criteria) and another four studies that did not
meet our strict inclusion criteria but were incorporated into the
findings because they focused on populations omitted from other
studies. Four topic areas were addressed in sufficient detail to
permit meaningful integration of findings across studies. Three
of these topics—consumer preference for consumer-directed
services, outcomes of consumer-directed care, and the cost-effectiveness
of consumer-directed care as compared with agency-directed or, more
generally, community-based care as compared with institutional care—are
related to different aspects of long-term care. They are included
in the body of this report. The fourth topic—outcomes of different
models of consumer-oriented managed care as compared with fee-for-service
models of care for people with disabilities—is included in
Appendix E.
Finally, we conducted 43 key informant interviews
by telephone or e-mail to review preliminary findings with key researchers,
policymakers, and consumers, and to elicit their views on factors
that promote or inhibit the adoption of consumer-directed reforms.
Key informants were identified through the literature search or
suggested by the CAB or by NCD staff. Please see Appendix F for
a list of our key informants and Appendix G for key informant interview
guides.
C. Definitions
Definitions of key terms used in this report are
as follows:
Disability
Disability is defined as any combination of medical,
physical, developmental, cognitive, or psychiatric conditions that
results in loss of function, employment, or age-appropriate activities.
This study uses a broad definition encompassing the full spectrum
of disability across the lifespan. This definition subsumes the
Maternal and Child Health Bureau definition of children with special
health care needs, the Supplemental Security Insurance (SSI) and
Social Security Disability Insurance (SSDI) definitions of disability,
and definitions that frame eligibility for federal, state, local,
or privately funded long-term care services, as well as serious
chronic illnesses that require more than average health care services.
The aim was to be inclusive rather than exclusive and to focus on
function and the need for care, rather than diagnosis.
Consumer-directed Care
The terms “consumer-directed care” and
“consumer-oriented care” have different meanings. The
term “consumer-directed care” has its roots in the independent
living movement and is most commonly used in reference to home-
and community-based long-term care and support services. Consumer
direction of services grows out of a philosophical orientation that
emphasizes the ability of people with disabilities to assess their
own needs and make choices about what services would best meet those
needs. It also reflects a view that consumers can and should have
options to choose the personnel or provider entities that deliver
their services, manage the delivery of services, and monitor the
quality of services. Consumer-directed care is applicable across
the spectrum of disability, although the language used to capture
the concept varies among disability groups. For purposes of this
project, consumer-directed care is considered to apply to a system
or strategy with the characteristics described above in relation
to any disability and for any age group. 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” and “consumer-driven”
to refer to private health insurance characterized by high deductibles
and low premiums.
Consumer-oriented Care
“Consumer-oriented care” has a broader
definition than consumer-directed care. Decisions in the health
care world are typically driven by a combination of clinical expertise
and business concerns. The term “consumer-oriented care”
applies to reforms and strategies within health care delivery systems
that are “directed” by professionals or by provider/consumer
partnerships but seek to ensure that decisionmaking is responsive
to the needs and concerns of people with disabilities. Consumer-oriented
practices include strategies to expand insurance coverage or benefits
for people with disabilities; to promote health and well-being through
primary and preventive services; to provide integrated and interdisciplinary
care; and to promote the delivery of care in the least restrictive
setting (Ireys et al., 2002).
In practice, the line between consumer-directed and
consumer-oriented care is not precise. Some systems lie somewhere
between the two and some are designed to incorporate elements of
both. It is less important to make a precise distinction between
the two than to recognize differences as research is carried out
so that real differences among models of care are identified and
analyzed as the basis for deeper understanding.
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
- Cost-effectiveness
D. Overview of Report
This report assesses the extent and types of knowledge
about federal and state consumer-directed health care policies,
programs, and practices for people with disabilities in America.
By highlighting what is known about what works in the area of consumer-directed
health care, the report aims to inform policy discussions among
policymakers, practitioners, researchers, consumers, and advocates
for health reform. The report’s specific objectives are to
examine the following:
- Current laws for consumer-directed and consumer-oriented
health care;
- Program and policy trends in the financing,
availability, and structure of consumer-directed and consumer-oriented
health care;
- Outcomes of consumer-directed and consumer-oriented
health care;
- Factors associated with the implementation
of models of consumer-oriented health care;
- Barriers to and facilitators of program
implementation;
- The role of federal agencies in evaluating
consumer-directed and consumer-oriented health care initiatives;
and
- Recommended “next steps” for
increasing the scope and quality of knowledge and practice of
consumer-directed health care and research.
To achieve these objectives, the report provides
a systematic, multidimensional analysis of existing policy and research
and includes insights provided by consumers, program administrators,
policymakers, advocates, and researchers. The report examines a
range of interrelated issues to establish a broad-based foundation
for understanding what is and is not known about consumer-directed
health care and its place in America’s health reform movement.
III.
Legal
and Regulatory Framework
for Consumer Direction
Equal rights, access to care, adequate health care
coverage, and the option to obtain services in community settings
are important prerequisites for consumer-directed or -oriented health
care. This section provides a brief review of the laws that form
the framework for consumer-oriented programs. Appendix H presents
the chronology of these federal legislative initiatives. Appendix
I provides a more detailed overview of the laws and initiatives
discussed below.
The concept of access to community-based health care
services in the least restrictive environment has its roots in the
Rehabilitation Act of 1973, which extended civil rights protections
to people with disabilities. In 1990, the Americans with Disabilities
Act (ADA) expanded the Rehabilitation Act, extending equal access
requirements to facilities and replacing the earlier mandate for
provision of services in the “least restrictive environment”
with a more positive requirement for the “most integrated”
services (ADA Web site, 2003). The ADA in turn provided critical
language for the Supreme Court Olmstead decision of 1999, which
required public entities to provide services to people with disabilities
in the most integrated setting appropriate for their circumstances
(CMS Web site, 2003). The New Freedom Initiative, announced in 2001,
promotes implementation of the Olmstead decision by coordinating
existing initiatives and funding new activities to enable people
with disabilities to live, receive services, and participate in
their communities instead of living in institutions.
The concept of access to coverage for health and
consumer-oriented long-term care has its roots in the Medicaid program,
established as an amendment to the Social Security Act in 1965.
Medicaid is the primary source of government funding for acute and
long-term care for low-income individuals with disabilities. Since
1965, Medicaid law has been amended to expand Medicaid coverage
to broader populations through the Medically Needy program and,
more recently, the Balanced Budget Act (BBA) of 1997, which created
the State Children’s Health Insurance Program (SCHIP). One
drawback to the Medicaid program is that people with disabilities
who are able to find and retain employment lose their Medicaid benefits
(and often Medicare benefits as well) as a result of increased earnings
or gainful employment. Two pieces of legislation, the BBA’s
Medicaid Buy-In provision and the Ticket-to-Work and Work Incentives
Improvement Act (TWWIIA) of 1999, allow states to provide health
care coverage for people with disabilities who work or want to work.
The Medicaid program has provided coverage for institutional
long-term care since its inception, with amendments over time that
have opened the door to community-based care. To date, only 26 states
have implemented Medicaid buy-in programs, most of which are very
limited. In 1981, the Omnibus Budget Reconciliation Act established
the 1915(c) Home and Community Based Service Waivers (HCBS) program,
allowing states to provide home- and community-based services to
targeted groups of individuals as an alternative to institutional
care. The BBA of 1997 permitted states to cover habilitation services
in residential and day settings, removing institutionalization as
a requirement for coverage of habilitation services. Finally, Section
1115 of the Social Security Act provides a framework for research
and demonstration programs that involve either the Medicaid or Medicare
programs, and these demonstrations have been an important vehicle
for testing new models of consumer-directed or -oriented health
care.
Other federal programs also fund services or benefits
for people with disabilities. These programs include the Medicare
program, also established under an amendment to the Social Security
Act in 1965, which covers health care services for people with disabilities;
and the Rehabilitation Services Administration, established under
the Rehabilitation Act of 1973, which provides grants to states
and a range of public and private entities for vocational rehabilitation,
home care assistance services, assistive technology, supportive
employment services, and independent living centers (U.S. Department
of Education, 2004). In addition, Title V of the Social Security
Act funds state Children with Special Health Care Needs programs
to provide services, technical assistance, and support for children
with disabilities and their families. Finally, support for the care
provided by informal family caregivers is offered through amendments
to the Older Americans Act of 1965, including the National Family
Caregiver Support Program in 2000, the Lifespan Respite Care Act
of 2003, and the Family and Medical Leave Act in 1993.
IV.
Program
and Policy Trends
A. Introduction
Current initiatives that incorporate aspects of consumer
direction or consumer orientation include different kinds of interventions,
target different populations, and emphasize different goals and
objectives, so that any attempt to categorize them has to be somewhat
arbitrary. In this section, we attempt to capture the program and
policy trends embodied in these diverse initiatives and how they
have affected service systems. We have divided initiatives in the
field into those that mainly affect financing of care; those most
related to the way care is structured (how services are designed);
and those most related to process (how services are managed and
implemented).
B. Trends in the Financing of Care
The main sources of funding for the health and long-term
care of individuals with disabilities are the Medicaid and Medicare
programs, other government agencies, and out-of-pocket expenditures
by consumers and their families. The Medicaid program is the largest
public funder of long-term care services for people with disabilities.
In 2002, nursing homes received 41 percent of their revenue, and
home health agencies received 17 percent of their revenue, from
Medicaid programs (AAHSA, 2002). In addition to providing coverage
for nursing home care, intermediate care facilities for the mentally
retarded (ICFs/MR), and home health services, Medicaid offers three
important vehicles to fund consumer-directed long-term care services
for people with disabilities:
- The optional Medicaid state plan benefit for personal assistance;
- 1915(c) Home and Community-Based Services (HCBS) Waivers; and
- 1115 Research and Demonstration Waivers.
Medicare is the second largest public funder of long-term
care services, and in 2002 financed 10.6 percent of all nursing
home care and 35.6 percent of all home health care (AAHSA, 2002).
However, the Medicare program does not provide coverage for personal
assistance or many of the community-based long-term care services
elected by states as options in their Medicaid coverage of eligible
individuals. In addition, federal tax policy encourages the purchase
of long-term care by permitting an individual to include a portion
of premiums paid for tax-qualified long-term care insurance along
with other unreimbursed medical expenses as a tax deduction (Kreitler,
2003). This deduction is available for taxpayers who itemize and
whose medical expenses exceed 7.5 percent of their adjusted gross
income. The amount of the premium that can be deducted is limited
by a sliding scale based on age. This federal tax deduction does
not seem to be very persuasive, however, because only 7 percent
of long-term care is financed by private insurance (AAHSA, 2002).
Other government agencies, at the federal, state,
and county levels, are additional sources of long-term care funding.
Funding from these agencies often fills important gaps between publicly
funded services and what people can afford to buy on their own.
Recent federal initiatives have expanded support for family and
other informal caregivers of individuals with disabilities—services
that are rarely covered by either Medicaid or Medicare.
Out-of-pocket expenditures for long-term care and
support services are also substantial. AARP found that 84 percent
of people 50 to 64 and 57 percent of those 65 or older who received
long-term support services relied exclusively on informal caregivers,
which implies out-of-pocket payment and/or loss of income on the
part of unpaid family caregivers (Gibson et al., 2003). Another
analyst estimated the total value of national spending on informal
and unpaid care to be approximately $196 billion (1997 dollars),
while nursing home care was estimated to have an economic value
of $83 billion and formal home health care, $32 billion (Arno et
al., 1999).
Expansion of Medicaid and Medicare Financing
Since they were established in 1965, the missions
of both Medicaid and Medicare have broadened, so that each now plays
a larger role in serving people with disabilities. The Medicare
program, for example, started as insurance coverage for older Americans,
but within its first decade, people with disabilities became eligible
for coverage under certain conditions. Several mechanisms have been
used to expand Medicaid eligibility for people with disabilities:
HCBS Waiver Programs, 1115 Waiver Programs, SCHIP, and Medicaid
buy-in programs. As a result, the number of people with disabilities
under the age of 65 who receive Medicaid benefits has increased
steadily, from 6.5 million to 8.6 million in the seven years from
1995 to 2003 (CMS Web site, 2003).
Under some HCBS Waiver Programs, Medicaid income
and asset rules are relaxed to expand eligibility for community-based
services to individuals with disabilities who meet the functional
criteria for institutional care in nursing homes or ICFs/MR. Some
1115 Research and Demonstration Waiver Programs have expanded Medicaid
eligibility for people with disabilities by raising the income cutoff
for eligibility. For example, TennCare, the Oregon Health Plan,
and MassHealth used savings generated by mandating enrollment in
managed care plans to finance coverage of new beneficiary groups.
Three other states have obtained 1115 Waivers to offer Medicaid
to low-income individuals living with HIV, which, unlike AIDS, is
not considered a disability and therefore does not ensure Medicaid
coverage through the Medicaid-SSI link. (SHFO Web site, 2004).
SCHIP, created by the BBA, extended insurance coverage
to many uninsured children (and some parents) whose families did
not qualify for Medicaid. According to the American Academy of Pediatrics
(AAP), the number of children receiving Medicaid and/or SCHIP coverage
increased from 15.2 million in 2000 to 18.6 million in 2002 (AAP
Report, 2002). Some of these children had special health care needs
or disabilities.
Medicaid Buy-In programs, which allow individuals
who would otherwise exceed income eligibility standards to purchase
Medicaid coverage as their sole coverage or to supplement their
private insurance, are another means of expanding eligibility for
people with disabilities. Twenty-six states had implemented Medicaid
Buy-In programs as of September 2003, and another nine states had
programs or authorizing legislation pending (Jensen, 2003). Ironically,
as Medicaid eligibility expansion continues through Medicaid Buy-In
and SCHIP, it is being restricted in some of the major 1115 Research
and Demonstration Waiver Programs. As state budget deficits mount,
some states are eliminating their expansion populations or lowering
the income limits for Medicaid eligibility, thus reducing access
to Medicaid coverage for many individuals with disabilities.
Medicaid Expansion Programs: Ticket-to-Work
(TWWIIA) and Medicaid Buy-In Programs
* “Infra” refers to infrastructure grants;
“Demo” refers to demonstration grants (Jensen, 2003;
CMS Web site, 2004).
Expanding Services
As Medicaid and Medicare have expanded eligibility
to include individuals with disabilities, they have, at least until
recently, often expanded benefits to meet the needs of this population.
It is important to note, however, that key informants we interviewed
hinted that this trend may have slowed or even reversed in recent
years due to the dwindling of matching state funds once used to
expand coverage.
Home and Community Based Services (HCBS) Waivers
have played the major role in expanding the range of community-based
services covered by Medicaid for people with disabilities. Initially,
HCBS programs were limited by the state’s capacity for institutional
care—in other words, the number of people enrolled in the
Waiver could not exceed the capacity of nursing homes or ICFs/MR
to accept them. However, since the early 1990s, federal regulations
have allowed states to provide HCBS to individuals who meet institutional
care criteria, regardless of the capacity of institutions to accept
new patients. Thus, between 1992 and 2002, HCBS Waiver Programs
for people with developmental disabilities grew more than 500 percent
(Lakin and Prouty, 2003). Approximately three-quarters of Medicaid
HCBS Waiver funds are spent on services for people with developmental
disabilities or mental retardation (Doty, 2000). These programs
extend case management, personal care assistance, adult day programs,
habilitation services, and respite care to people who would otherwise
reside in ICFs/MR.
As of February 2002, there were 263 active HCBS Waivers,
with all but one state having at least one HCBS Waiver (CMS Web
site, 2003). These programs vary widely from state to state and
are distributed unevenly across states and Waiver target populations.
New York and California alone account for 28 percent of the increase
in HCBS participants, and five states (Minnesota, North Dakota,
South Dakota, Vermont, and Wyoming) have twice the national average
of HCBS recipients per 100,000 citizens, while five states (Illinois,
Indiana, Kentucky, Mississippi, and Nevada) and the District of
Columbia have less than half the national average (Lakin and Prouty,
2003). As the demand for HCBS continues to grow, further expansion
may be limited by state revenue shortfalls and the requirement that
states share in the cost of expansion (Lakin and Prouty, 2003).
Home and Community-Based Waivers/Personal
Care Service Under the State Plan
1For states marked
C, there is some mention of consumer-directed or consumer-oriented
services in CMS's Waiver description. In a couple of cases, the
Waiver is still pending.
(CMS Web site, 2004)
It is important to note that personal assistance
services, whether provided as part of the Medicaid state plan or
as part of an HCBS Waiver Program, may be provided as agency-directed
services or as consumer-directed services. Some states that offer
personal assistance as a state plan benefit, such as Maine and Massachusetts,
provide the benefit under a consumer-directed model. Similarly,
some HCBS Waiver Programs, such as California’s In-Home Supportive
Services Program, the nation’s largest personal assistance
program, allow for consumer direction of long-term support services
(CMS Web site, 2004).
The 1115 Research and Demonstration Waivers have
also been used to expand services for people with disabilities.
For instance, when Florida crafted its Cash and Counseling Program
under an 1115 Waiver, the state provided cash allowances that could
be used for personal care, therapists, home modifications, respite,
and a multitude of individually determined services. In addition,
some state-managed care programs that operate under 1115 Waiver
authority allow managed care plans to provide “value-added”
benefits such as care coordination, expanded substance abuse treatment
services, personal assistance, transportation, or home-based care.
In particular, some of the programs that integrate Medicaid and
Medicare funding provide expanded benefits for those who are dually
eligible for Medicaid and Medicare. Programs such as the Program
of All-Inclusive Care for the Elderly (PACE) and Minnesota Senior
Health Options (MSHO) provide an entire continuum of community-based
services, ranging from adult day health to transportation for seniors
with chronic needs.
(NPA Web site 2004; MMIP Web site, 2004)
Despite this expansion in Medicaid funding for community-based
care, more than half of all Medicaid funds for long-term care nationally
still go to nursing homes (Doty, 2000).
Again, it is important to note that within this broad
picture, there is significant variation by state. For example, while
Tennessee spends 96 percent of its long-term care funds on nursing
homes, Oregon spends nearly half of its long-term care funds on
home- and community-based services (Doty, 2000).
The Medicaid Community Attendant Services and Supports
Act (MiCASSA) is a new initiative proposed to expand community-based
services for people with disabilities. Introduced in May 2003 as
an amendment to Title XIX of the Social Security Act, MiCASSA would
allow Medicaid beneficiaries who are eligible for institutional
care to have a choice of receiving that care in a community-based
setting without an HCBS Waiver (Novak, 2004; Adapt Web site, 2004).
MiCASSA would also allow these beneficiaries the option of choosing
consumer-directed long-term care services and would require that
Medicaid cover services that are “based on functional need,
rather than diagnosis or age; provided in home or community settings,
including school, work, recreation or religious settings; selected,
managed, and controlled by the consumer of the services; supplemented
with backup and emergency attendant services; furnished according
to a service plan agreed to by the consumer; and accompanied by
voluntary training on selecting, managing and dismissing attendants”
(Novak, 2004). MiCASSA would ultimately provide consumers with consumer-directed
long-term care options that could concurrently address the frequently
cited challenges in the current system.
C. Trends in the Structure of Care
Six trends that have affected the structure of service
delivery in relation to consumer-directed or oriented health care
are (1) deinstitutionalization and prevention or delay of institutionalization,
(2) the disability rights and independent living movement, (3) a
new role for foundations in supporting structural reforms in health
care, (4) growing support for informal and family caregivers, (5)
the expansion of various types of managed care, and (6) the development
and implementation of the medical home model for serving children
with health care needs.
Deinstitutionalization
The trends toward deinstitutionalization in mental
health began in the 1950s with the development of psychopharmacological
drugs, which could dramatically affect symptoms of previously institutionalized
individuals. For many former patients, adherence was feasible only
in the context of ongoing support. And the reality was that many
states never created the outpatient services that were supposed
to provide that support. In fact, deinstitutionalization occurred
for several decades before supports and other measures to alleviate
the problems were implemented (Palmer, 2004). Deinstitutionalization,
as implemented, was widely criticized for turning people out of
hospitals to fend for themselves, too often on the street or in
jails (TAC Web site, 2004).
The move to deinstitutionalize people with developmental
disabilities followed deinstitutionalization of individuals with
mental illness. It occurred in direct response to a series of class
action lawsuits and, more generally, an advocacy movement that brought
out in the open the poor treatment of individuals in some institutional
settings (Davis et al., 2000). In 1971, Congress authorized federal
money for ICFs/MR as an alternative to large state institutions
(Lakin and Prouty, 2003). As ICFs/MR proliferated through the 1970s,
pressure increased for further community integration of individuals
with mental retardation. States responded with smaller “community
ICFs/MR” (4- to 8-bed residences as opposed to 16- to 32-bed
residences), followed by HCBS Waiver Programs that provided supports
in peoples’ own homes (Lakin and Prouty, 2003). In 1991, New
Hampshire and the District of Columbia became the first jurisdictions
to close all public institutions for people with developmental disabilities
and develop delivery systems based entirely on community-based services
(Davis et al., 2000). Since then, Alaska, Hawaii, Maine, Minnesota,
New Mexico, Rhode Island, Vermont, and West Virginia have followed
suit, and other states are using Waivers and other innovative means
to reduce institutional care (LDDC Web site, 2004; Davis et al.,
2000).
For other individuals with disabilities—especially
older Americans, adults with physical disabilities, and children
with health care needs—who have not been institutionalized
on the same scale as people with mental illness or developmental
disabilities, the trend over time has been to prevent or delay institutional
care. There have been programs to move elders out of institutions—12
states participate in Nursing Home Transition Grants (Chaney, 2003)
to transition individuals from nursing homes to the community and
to avoid unnecessary institutionalization following inpatient hospital
stays (CMS Web site, 2004)—but these programs are small. The
majority of programs for the elderly focus on preventing or delaying
institutionalization. These programs, generally operating under
HCBS Waivers, often integrate adult day care with medical care,
personal care, prescription drugs, and respite care. Some programs,
such as PACE, include a nursing facility benefit to ensure a seamless
transition when an individual requires more care than can be provided
in the community.
The Disability Rights Movement
Concurrent with the movement for deinstitutionalization
and led by many of the same key players, the more general disability
rights movement took hold. The disability rights movement reflected
the tenets and strategies of the civil rights movement, with a grassroots
call to eliminate discrimination against people with disabilities
and a strong emphasis on self-determination for people with disabilities.
For many people with disabilities, especially those with physical
disabilities, these goals were most explicitly embodied in the independent
living movement.
The first Center for Independent Living was founded
in Berkeley in 1972; almost 500 Independent Living Centers are in
existence today (IL USA Web site, 2004). Independent Living Centers
promote the view that people with disabilities can do a better job
of designing and implementing service programs than do nondisabled
“experts.” Both the theory and practice of independent
living are counterposed to what advocates term the “medical
model,” which views disability as an abnormal state and people
with disabilities as abnormal people to be “fixed” through
medical intervention.
Disability activism focused on a range of social
reforms that followed directly from the initial thrust for community
living. The Architectural Barriers Act of 1968, the Rehabilitation
Act of 1973, and the Americans with Disabilities Act of 1990 sought
to ensure that once in the community, individuals with disabilities
would have access to the full range of public and private facilities,
settings, services, and programs. From the 1970s through the present,
disability activism has provided the impetus for many consumer-oriented
and -directed reforms. Family advocates were a major force in establishing
Katie Beckett Waivers. Prior to this 1981 reform, Medicaid coverage
was available to children who were hospitalized for more than one
month only if their families were otherwise over income for Medicaid.
The Katie Beckett Waivers permitted families to retain Medicaid
coverage if they chose to provide hospital-level care for their
child at home. In 1992, parents of children with health care needs
founded Family Voices, a national family advocacy group. One preliminary
success of advocacy by Family Voices and allies was the inclusion
of medical homes for children with health care needs in the Healthy
People 2010 articulation of health objectives for the nation (Family
Voices Web site, 2004; CDC NCHS Web site, 2004).
Elder groups such as the 35 million-member AARP have
addressed concerns such as elder abuse and financial exploitation
by caregivers (AARP Web site, 2004). Groups representing individuals
with mental illness have fought for self-help models and patient
advocate positions for residents of mental health institutions.
These are but a few of the most noteworthy consumer-directed or
-oriented health care reforms that have been advanced by the disability
rights movement.
Foundation-Sponsored
Reforms
Although foundation funding for health and long-term
care is only a fraction of government funding, foundation funds
often serve as the catalyst for new initiatives. Both national and
local foundations have funded consumer-oriented and -directed programs;
however, several foundation initiatives related to the structure
of care have had major national impact.
Self-Determination Projects
The self-determination movement for people with cognitive
disabilities was launched in the early 1990s with 38 people in New
Hampshire, under a foundation demonstration grant. The two populations
included in the pilot were individuals with developmental disabilities
and individuals with acquired brain injuries. Since the initial
pilot in New Hampshire, self-determination programs have been launched
in at least 20 other states. Core features of these programs include
the following:
- Person-centered planning, enabling individuals and families
to define their own needs;
- Independent professional support to help individuals and their
families identify needs and choose services;
- Individualized budgeting, so funds can be used to address individual
needs and/or preferences; and
- Fiscal intermediaries, responsible for purchasing services and
handling legal and accounting matters on behalf of participants
(RWJF Web site, 2004).
Cash and Counseling Demonstration Programs
In 1996, the Office of the Assistant Secretary of
Planning and Evaluation in the Department of Health and Human Services
(DHHS), the Centers for Medicare and Medicaid Services (CMS), and
the Robert Wood Johnson Foundation joined to cosponsor Cash and
Counseling Demonstration projects that allow people with disabilities
to direct their own home- and community-based personal assistance
services and supports under 1115 Waiver authority. Three states,
Arkansas, New Jersey, and Florida, were granted 1115 Waivers to
operate programs in which individuals manage monthly cash budgets
to purchase long-term supports and services. Participants receive
counseling to help plan and administer the use of the funds and
may designate representatives (including family members) to make
decisions on their behalf. Program models and populations served
are different in each state, with some states restricting the self-directed
benefits to personal assistance, and other states including a broader
range of services. Early evaluation results for the Cash and Counseling
Demonstrations are discussed in Section V of this report. Based
on preliminary results, DHHS has issued grants to additional states
to begin planning Cash and Counseling programs.
Support for Informal and Family Caregiving
The role of informal and family caregivers has been
underrecognized and undersupported historically, and caregiver burden
may ultimately limit system capacity to ensure long-term community-based
care for people with disabilities, especially individuals with cognitive
impairments. State and federal policymakers have strong incentives
to support the role of family caregivers, as they minimize the effect
of systemic fluctuations that might otherwise render long-term community
care impossible. However, programs that allow consumers to hire
and pay family members for their care force the purchasers to recognize
and account for the traditionally unaccounted for and uncompensated
care provided by family and friends. Germany’s consumer-directed
cash program provides compensation for informal and family caregivers,
and though satisfaction with the program is high, it increased system
costs without adding new resources for care (Wiener et al., 2003).
It is reasonable to hypothesize that while paying informal and family
caregivers might increase costs, the practice could offer long-term
savings by prolonging the period during which community care is
feasible and could reallocate federal dollars for personal choice
rather than paying for nursing or institutional care. The literature
is ambiguous on this subject, however, since there are no longitudinal
cost-effectiveness studies on the role and contributions of informal
caregivers.
In addition to financial compensation, other support
for family members who provide care for a relative includes counseling
or respite care, tax incentives, and employer-based mechanisms such
as family and medical leave or private long-term care insurance
(Montgomery and Feinberg, 2003). One national initiative in this
area is the National Family Caregiver Support Program (NFCSP), established
in 2000 under the Older Americans Act. Services funded by this program
include respite care, caregiver education, assistance to caregivers
in accessing services, individual and group counseling for caregivers,
and supplemental services, such as home modifications. This program
constitutes a promising start in providing support to family caregivers
but does not compensate caregivers for lost income or provide services
to all caregivers (Montgomery and Feinberg, 2003). Only family caregivers
of older adults (60+) and grandparents or other relatives who are
caregivers for children or persons with developmental disabilities
or mental retardation are included in the program (AoA Web site,
2004).
The Family and Medical Leave Act (FMLA), enacted
in 1993, can be considered another policy initiative in this area.
FMLA was, in fact, the first federal policy intended to directly
benefit family caregivers, even though it is not targeted specifically
to caregivers of people with disabilities. It allows employees up
to 12 weeks per year of unpaid leave in the event of a birth or
adoption of a child or to care for a relative. FMLA applies only
to employees in companies of more than 50 people, employees who
work 1,250 hours or more per year, and employees who have been with
their company for a year or more. Furthermore, FMLA does not address
the important issue of lost income of family caregivers. Some states,
such as California, offer more generous versions of FMLA by providing
payment for family leave. Also, almost half of the major corporations
in the United States offer elder care and child care assistance
to employed caregivers, most often in the form of dependent care
spending accounts. These policies do not appear to be a national
solution for people who care for relatives with a chronic condition,
but they are steps in the right direction (Montgomery and Feinberg,
2003).
Expansion of Managed Care
Over the past 20 years, managed care has become the
framework for the delivery and financing of health care for an increasing
proportion of the U.S. population. Dramatic growth in penetration
of the insurance market by managed care organizations (MCOs), especially
in the early to mid-1990s, reflected a belief that managed care
could contain spending and increase access to care without loss
in quality (Frakes, 1997). While the centralized management inherent
in MCOs often moves control of an individual’s health care
away from the physician/patient interaction, some managed care systems
have built consumer voices into system planning and evaluation.
The expansion of managed care as a mainstream health
delivery strategy has been accompanied by the implementation of
a number of small, specialized programs for people with disabilities.
Appendix J describes Medicaid managed care policy trends and specialized
programs.
Medical Home
The factors that promote consumer direction and orientation
for adult care have engendered a parallel reform movement for the
care of children with special health care needs. The term “medical
home” was popularized by the American Academy of Pediatrics
(AAP) in a 1992 policy statement to indicate an approach to provision
of pediatric care that is “accessible, continuous, comprehensive,
family centered, coordinated, compassionate, and culturally effective”
(Sia et al., 2002). In a medical home setting, parents (and youth,
as children mature and take on self-management of care), pediatricians,
and specialists work in partnership to identify and ensure access
to the services to help children with special health care needs
achieve their maximum potential. These may include both clinical
and nonclinical services, such as family-to-family support groups,
respite for parents, and community recreation programs for children.
This view of the pediatrician’s office as the hub of a network
of services implies a shift away from tertiary care to primary care
as the center of care for children with special health care needs.
The AAP model emphasizes care coordination as a central role of
the medical home, implying allocation of resources from within and/or
outside the primary care practice to support this labor-intensive
function.
A key feature of the medical home model is the importance
it assigns to parent/provider relationships. The model emphasizes
the critical contribution that parents make to all aspects of children’s
care, from the medical management of their own individual children
to a role in the development of policy at state and national levels.
This core value closely parallels the emphasis placed on consumer
expertise and autonomy in the adult disability world: each seeks
to promote positive outcomes through community integration of people
with disabilities and through respect for consumer expertise and
choice in the design or management of care. Different approaches
to medical home implementation are being tested and evaluated in
a wide variety of practice settings nationwide. The Maternal and
Child Health Bureau of DHHS and the AAP are funding demonstration
projects in 15 states. As these are works in progress, outcomes
are not yet available in the published literature.
D. Trends in the Process of Care
The process of care refers to the activities carried
out within different service delivery structures: what gets done,
how it gets done, and who does it. Process trends in long-term care
include the increasing opportunities for consumer direction and
consumer control of everything from the hiring, management, and
firing of support personnel to consumer input into or direction
of program evaluation efforts. In addition, some progress has been
made in supporting informal and family caregivers.
Consumer Direction in Long-Term Care
Consumer direction is best understood as a continuum
of activities in relation to the way care is carried out. At its
full expression, consumer direction means money is given to the
consumer to purchase desired services without the support or interference
of case managers, counselors, or fiscal agents. The other end of
the continuum would presumably be mandatory institutionalization.
Relatively few programs offer consumers full autonomy, and these
programs are usually affiliated with Independent Living Centers.
Most consumer-directed programs fall in the middle of the continuum,
allowing the consumer to choose personal care assistants and train
them, but supporting the consumer through fiscal intermediaries
and/or vendor agencies that fulfill some of the responsibilities
of an employer.
Community-based long-term care programs that incorporate
some degree of consumer direction have increased sharply over the
past decade. In fact, 65 percent of 139 existing consumer-directed
home- and community-based service programs have been implemented
since 1990, and 17 percent since 2000 (Doty and Flanagan, 2002).
Although the current estimate is that 486,000 individuals participate
in consumer-directed care, this trend is not spread evenly across
the nation, as more than half of the participants live in California
(Doty and Flanagan, 2002).
The services that are most frequently placed under
the direction of consumers in these models are personal care, homemaker/chore
services, and respite care (Doty and Flanagan, 2002). Nearly half
of all consumer-directed programs allow consumers to use Waiver
funds to cover transportation, while one in five allows consumers
to purchase friendly visitor/companion services or nonreimbursable
medical services. Nearly half allow the purchase of miscellaneous
services such as handyman services, home or other environmental
modifications, special equipment, personal emergency response systems,
vehicle modifications, home-delivered meals, adult day health, or
training in independent living skills (Doty and Flanagan, 2002).
Seventy-four percent of consumer-directed programs use intermediary
service organizations (ISOs) to assist participants with payroll
checks and taxes, employee benefits, and criminal background checks
(Doty and Flanagan, 2002).
The majority of programs impose restrictions on the
individuals who can be hired to provide support services, usually
disallowing legally responsible individuals (such as spouses, and
the parents or guardians of minor children) from being paid to provide
care (Doty and Flanagan, 2002) and prohibiting legally designated
representatives of consumers with cognitive impairments from hiring
themselves (Doty and Flanagan, 2002). There are several exceptions,
however. California’s large In-Home Support Services program
allows consumers to hire family members.
The populations most frequently included in consumer-directed
HCBS programs are working-age adults with physical disabilities,
followed by older Americans, adults with mental retardation or developmental
disabilities, people with traumatic brain injuries, and finally
children with physical or developmental disabilities (Doty and Flanagan,
2002). Most programs limit participation to individuals who have
the ability to self-direct (i.e., who have no cognitive impairments
or have parents who provide the direction) or require individuals
with cognitive impairments to have representatives willing to assist
in directing their services (Doty and Flanagan, 2002). The following
table shows some of the most commonly cited consumer-directed programs,
including Consumer-Directed Personal Care and Self-Determination
initiatives, across the country.
Consumer-Directed Personal Care and Self-Determination
State Programs
(Cash and Counseling Web site, 2004; RWJF Web site,
2004; various literature including CMS Web site, 2004)
In June 1999, the Supreme Court interpreted Title
II of the ADA as a mandate for public entities to provide services
to persons with disabilities in the most integrated setting appropriate
to their circumstances. The Olmstead decision obliges public entities
to make reasonable accommodations by developing and implementing
comprehensive plans to provide services in less restrictive settings
and ensure that waiting lists for services in community-based settings
move ahead at a reasonable pace. The Administration announced the
New Freedom Initiative in response to the court decision. To encourage
and support states’ development of plans to restructure their
long-term care systems, CMS has solicited multiple categories of
Real Choice Systems Change Grants since 2001. The overarching emphasis
of these grants is to build community-based and integrated systems
for people with disabilities, including features of consumer-directed
practices to allow consumers to make decisions about the types of
services they want and the ways in which they receive them. The
chart below illustrates the chronology and varied use of grant funds
by state (CMS Web site, 2003).
Olmstead and Real Choice Systems Change Grants
(CMS Web site, 2004; DHHS Press Release, 2003 and
2004; CHCS Web site, 2004)
Consumer Orientation in Different Domains
of Care
Two emerging trends that do not fit into a narrow
definition of consumer direction do fit within a broader consumer
orientation construct:
- Consumer involvement in research and program evaluation to ensure
that outcomes important to consumers are studied in order to provide
a baseline from which improvements can be made and
- Interventions aimed at improving provider-consumer communication.
Members of the CAB were particularly interested in
examining the trends and outcomes of initiatives in these two areas.
While we did not find much in the way of outcomes literature on
these two topics, we did find policy literature and key informants
who commented on them.
Consumer Involvement in Research
The expansion of consumer-directed care means that
individuals with disabilities have choices, not just between institutional
and community-based care, but also within community-based options.
It is important for people with disabilities to have input into
the development, implementation, and evaluation of these plans and
programs. It is especially important to include a consumer point
of reference in developing outcome measures.
Researchers rather than consumers defined the majority
of outcome measures reported in Section V. In follow-up interviews
with some of the researchers, we learned that consumer focus groups
informed the development of some of the evaluation measures, but
the evaluation process is still largely the jurisdiction of researchers.
Toward the inclusive end of this continuum, the Cash and Counseling
Demonstration evaluation used consumer focus groups to identify
domains for its research, and some organizations such as the National
Institutes of Health, National Cancer Institute, and Department
of Defense have involved consumers in setting their research agendas.
Key informants identified three organizations as
doing a particularly good job in the area of consumer involvement
in research: Advocates Involved in Monitoring in Oklahoma (OK-AIM),
Ask Me! in Maryland, and Family Voices. OK-AIM is a consumer-guided
monitoring program to ensure the quality of state-funded residential
services for people with developmental disabilities (ODLC Web site,
2004). Ask Me! is a quality-of-life satisfaction survey administered
by trained interviewers with developmental disabilities (DDA of
MD Web site, 2004). Family Voices participates in research projects
such as the Your Voice Counts study with the Heller School at Brandeis
University.
Community-based participatory research is an emerging
method of public health research that aims to actively engage and
involve participants (including representatives of the community
and affected consumers) in all aspects of designing and conducting
research efforts. Proponents of community-based participatory research
consider it a way to address the social inequalities associated
with disparities in health status between marginalized and mainstream
populations that compromise research in the field (Israel et al.,
1998).
Consumer-Provider Communication
Another area of research that the CAB asked us to
investigate was the impact of consumer/ provider communication on
care outcomes and satisfaction. Across the lifespan and the spectrum
of disability, CAB members identified communication as a key area
of concern for consumer-oriented and consumer-directed care. We
found very little in the published literature on this topic, although
it is a cornerstone of the medical home model for children and some
of the specialty managed care programs. The medical home places
equal emphasis on clear provider-to-consumer communication so that
parents and children understand medical information they receive
and are fully informed about options for intervention, and on communication
from parents and youth to providers, so that consumer experiences
and information are brought to bear on clinical options.
Provider/consumer communication is also a central
feature of many of the specialty managed care programs for adults
and children with disabilities. In early evaluations of the Minnesota
Disability Health Options (MnDHO) program in Minnesota and the Community
Medical Alliance CMA program in Massachusetts, members provided
many examples of how relationships with care coordinators (nurses
and nurse practitioners) and primary care providers led to increased
knowledge and understanding of their disabilities, chronic illnesses,
and preventive care needs, enabled them to make decisions about
their own self-care and life-style choices, and enhanced self-esteem
(Tobias, 2002; Tobias et al., 2003). Unfortunately, none of the
research literature examines the association between consumer/provider
communications and outcomes for people with disabilities.
In summary, the policy and program trends to support
consumer-directed and -oriented care include the broadening of federal
coverage for health and long-term care services for people with
disabilities on the part of expansion of access to community-based
services; a growing interest in consumer direction as a model for
the delivery of community-based care; and a growing recognition
that informal and unpaid family care is an important resource to
support. Some of these trends are threatened by current economic
constraints. The disability rights movements for children, working-age
adults, and elders have been the major drivers of consumer-oriented
and -directed care, supported by forward-looking foundations and
policymakers who understand that consumer direction and orientation
may hold promise, for both fiscal and programmatic reasons. Yet,
most of our public funds for long-term care still go to institutional
care, and many important policy and program questions remain untouched
by the research community. Thus, there is a lot of progress still
to be made.
V.
Outcomes
of Consumer-Directed Health Care
A systematic review of the research literature was
conducted to identify and evaluate the outcomes of consumer-directed
health care. The main outcomes identified in the research literature
addressed the following questions:
- Does preference for consumer-directed health care
vary by the nature of the disability, age, or other demographic,
geographic, or socioeconomic factors?
- Does consumer-directed health care lead to different
outcomes for consumers, including changes in satisfaction with
care, either for the consumer or for paid or unpaid caregivers,
in the following areas?
- Empowerment or control
- Community integration
- Extent of unmet needs
- Health status
- Quality of care
- Consumer safety
- Is consumer-directed or -oriented health care cost-effective
or cost neutral?
The CAB identified other potential outcomes of consumer-directed
care, such as employment and care in the least restrictive environment,
but they were not addressed in any of the studies of consumer-directed
long-term care. The literature review initially yielded 32 outcome
reports in peer-reviewed journals, government reports, and foundation
reports. The quality of the studies varied widely, however. Some
had sample sizes in the thousands, while the smallest had a sample
size of 11. Some were randomized control studies, others used comparison
groups, and still others had unclear research designs. The populations
studied also varied widely. Some were limited to individuals with
developmental disabilities or individuals with physical disabilities.
Some excluded people with severe cognitive impairments, while others
allowed proxy responses for this population. Most included working-age
adults with disabilities, and some also included elders. Only one
study addressed outcomes for children, all of whom were adolescents.
In order to rationalize the review of findings, we
established study inclusion and exclusion criteria. Unlike biomedical
reviews, in which highly rigorous standards may be applied to hundreds
of clinical studies, we were confronted with a paucity of research.
Highly rigorous standards would have led to the exclusion of most
of the studies identified and thus prevented even exploratory analyses
of outcomes across the different age groups or disability types.
Thus, our relatively inclusive selection criteria were as follows:
- Minimum sample size = 75.
- Sample selection process = random or universal sample of program
participants.
- Research design = comparison or control group preferred, longitudinal
where appropriate, cross-sectional permitted for preference studies.
In the discussion below, we prioritize results from
21 studies that met our criteria. However, we also reference findings
from a second set of studies that were either conducted on convenience
samples or had less rigorous research designs when those studies
addressed outcomes or populations that were otherwise neglected.
A. Does Preference for Consumer-Directed Health
Care Vary by the Nature of the Disability, Age, or Other Demographic,
Geographic, or Socioeconomic Factors?
In developing health care systems, it is important
for policymakers and planners to understand who wants consumer direction
and how much of it they want. Preferences might differ by age, nature
or severity of disability, race/ethnicity, or consumers’ social
or family networks and support. Seven studies were identified that
address this topic directly. Six of them met our criteria for rigor
in that the sample sizes were sufficiently large to permit conclusions,
and the samples were either randomly selected or universal samples.
We reference the seventh study, which involved a convenience sample,
because the sample was large and the study included important information
on the preferences of several minority populations that were not
examined in any of the other studies. Below is a brief synopsis
of each study.
The Gibson et al., 2003, report was based on the
results of a Harris Interactive Survey commissioned by AARP of persons
over the age of 50 with a disability who lived in the community.
Alone among the studies, this was a national survey of individuals
with a wide range of incomes and disabilities. Survey data were
weighted to correspond to the national population of individuals
over the age of 50 with a disability living in the community.
The Desmond et al., 2001, study was conducted among
adults with physical disabilities who received services from the
Medicaid Home and Community-Based Waiver Program in Florida. The
study was conducted as part of a needs assessment to understand
who might be interested in the Cash and Counseling Demonstration,
a consumer-directed option for the receipt of home- and community-based
Waiver services, and what their information and counseling needs
might be. The study used a random sample design; 743 individuals
participated for a 48 percent response rate. Both older and younger
adults were included in the study.
The Feinberg and Whitlatch, 1998, study was conducted
in California of family caregivers who received in-home respite
care through a state-funded program for individuals who were not
eligible for Medicaid but could not pay for services out of pocket.
Unlike most of the other studies on this subject, this research
examined the preferences of caregivers rather than consumers. All
of the respondents were providing care for family members with serious
cognitive disabilities, both older and younger adults. Families
that participated in this program were given a choice between agency-directed
and family-directed care. In contrast to other studies, respondents
in this study had actually made a choice between service models,
and thus results reflect actual rather than hypothetical preferences.
All program participants were asked to participate in the study.
One hundred sixty-eight responded for an 81 percent response rate.
The Mahoney et al., 1998, study was conducted with
Medicaid recipients in New York who were personal care clients,
as part of the Cash and Counseling Demonstration needs assessment.
It was a random sample design with 493 people in the sample for
a 23 percent response rate. Both older and younger adults were included
in the study.
Two studies were conducted by Simon-Rusinowitz et
al. The first, Simon-Rusinowitz et al., 1997, was conducted with
Medicaid personal care clients in Arkansas prior to implementation
of the Cash and Counseling Demonstration. Questions were similar
to those posed in the Desmond et al., 2001, and Mahoney et al.,
1998, studies, and the population surveyed was similar in that all
respondents were low-income Medicaid recipients with disabilities.
It was a random sample design, with 491 people in the sample for
a 34 percent response rate. Both older and younger adults were included
in the study.
The second study, Simon-Rusinowitz et al., 2001,
was conducted in Florida as part of the Cash and Counseling needs
assessment among adults with developmental disabilities who received
Medicaid HCBS Waiver services. Although all of the Cash and Counseling
studies allowed for surrogate responses, in this study 74 percent
of respondents were surrogates, whereas in the other studies, surrogates
represented a minority of respondents. This study involved a random
sample of 387 program participants, for a 54 percent response rate.
Sciegaj et al., in press, is the one study that involved
a convenience sample. This study was conducted in Boston among home
care clients who received care for at least one activity of daily
living (ADL) for a minimum of 12 months from one of four community-based
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