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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
organizations. Its purpose was to determine if interest in consumer-directed
care varied by race, ethnicity, or other factors. Study participants
were recruited from organizations based in the African-American,
Latino, Chinese, or white communities, and an effort was made to
obtain equal representation of each group.2 The study
did not indicate how this sample of 731 individuals, all of whom
were over the age of 64, were similar to or different from the other
clients served by the home care agencies.
2Equal representation of 200 respondents
was achieved among white, African-American, and Chinese individuals;
however, only 131 Latinos participated in the study.
The table below provides an overview of the study
sample sizes, locations, and basic research methods. Please see
Appendix K for more information on the similarities and differences
of these outcomes studies.
An Overview of the Seven Research Studies
All of the studies included individuals over the age
of 65, and most included individuals with disabilities under the
age of 65. Most of the studies included individuals with physical
disabilities; one was conducted exclusively among individuals with
developmental disabilities, and another explicitly mentioned the
inclusion of individuals with cognitive disabilities. Five of the
studies permitted surrogate responders, and the family caregiver
study targeted family members caring for people with cognitive disabilities.
Of note, none of the studies explicitly included individuals with
psychiatric disabilities or families of children with special health
care needs.
Findings on consumer interest in self-directed services
varied widely across the studies. It was highest among the national
sample of individuals with disabilities over the age of 50 (78 percent)
and among family caregivers of individuals with cognitive disabilities
in California (69 percent), who exercised their choice for family-directed
care when given the option. It was also expressed as a preference
by 59 percent of the consumers who received personal care services
in Florida. In the other four studies, fewer than half the participants
expressed an interest in consumer direction.
Age
The studies suggest that sometimes age matters and
sometimes it does not. In two of the Cash and Counseling preference
studies, younger consumers were more likely to express a preference
for self-direction than for older consumers. In addition, surrogate
respondents for people with developmental disabilities in Florida
were more likely to prefer consumer direction if the consumer was
younger. However, age was not associated with preference for consumer
direction in the national study of adults over the age of 50, among
personal care recipients in Arkansas, nor among family caregivers
of people with cognitive disabilities.
Gender
The vast majority of study respondents were female,
except in the national sample of people with disabilities over the
age of 50 and the survey of adults with developmental disabilities
in Florida. Most of the studies looked at the relationship between
gender and preference for consumer direction nonetheless. Six of
the studies found no significant association between gender and
preference for consumer-directed care. Only Mahoney et al., 1998,
found a significant relationship in multivariate analysis, with
men more likely than women to prefer consumer direction.
Race or Ethnicity
Five of the seven studies found that race or ethnicity
was associated with preference for consumer direction. The two studies
that found no difference were the Gibson et al., 2003, national
study conducted for AARP and the Desmond et al., 2001, Florida study.
One of the limitations of the AARP study was the small representation
of racial or ethnic minorities in the sample. However, the Desmond
et al., 2001, study was similar in design to three studies in Florida,
New York, and Arkansas that all found a stronger preference for
consumer direction among African Americans and/or Latinos than among
whites. The Sciegaj et al., in press, study of older adults in Boston
found that Chinese elders were more likely to express preference
for consumer direction and Latinos were more likely to express preference
for a traditional case management model (compared with African Americans
or whites). However, with the exception of Chinese elders, the vast
majority of study respondents expressed a preference for the agency-directed
model of care. In most of these studies, the association between
race or ethnicity and preference remained significant in multivariate
analyses.
Nature or Severity of Disability
None of the studies specifically examined differences
in preference among individuals with different types of disabilities.
The two studies that examined preferences among surrogate respondents
caring for adults with cognitive disabilities, however, reported
preference rates of 44 to 69 percent, while studies that focused
more explicitly on individuals with physical disabilities reported
preference rates of 29 to 59 percent. Since none of these studies
explicitly analyzed differences by disability type, and reported
preference rates were not broken out by age, race/ethnicity, or
other potentially confounding factors, it is difficult to draw precise
conclusions. However, it is clear that people with different disabilities
all expressed some level of interest in consumer direction, and
at the same time, within each disability group there were those
who preferred agency direction. None of the studies addressed psychiatric
disabilities, even though some of the study respondents may have
had serious mental health conditions, and again, none reflected
the preferences of parents of children with disabilities of any
type.
Severity of disability was associated with preference
for consumer direction in three studies, and in all three cases
this preference was stronger among individuals with more severe
disabilities. However, in all but one case, the association between
severity of disability and preference for consumer direction disappeared
in multivariate analysis.
Other Factors
Some studies looked at other factors that might be
associated with preference for consumer-directed services. These
factors included health status, education level, current service
use, whether or not the individual lived at home, the availability
of family members to provide care, the availability of informal
caregivers in general, satisfaction with current services, the consumer’s
prior experience with hiring and paying caregivers, the consumer’s
prior experience with managing and supervising caregivers, and the
consumer’s willingness to assume responsibility for caregiver
management at various levels.
In multivariate analyses, one study found that having
family members in the home was a predictor of preference for consumer
direction, and one did not. Two studies found that having an informal
caregiver (not necessarily a family member) available was a predictor
of preference for consumer direction. One study found that a higher
education level was a predictor of consumer direction preference,
but two did not. Although most of the studies found that respondents
were generally satisfied with their current (agency-directed) services,
in some studies dissatisfaction with current services was associated
with preference for consumer direction, and in other studies it
was not. Prior experience in hiring and paying or managing and supervising
caregivers was associated with preference for self-direction in
three of the studies.
In summary, it is difficult to argue that any of
these factors other than prior experience with consumer direction
and willingness to assume responsibility for caregiver hiring, management,
and supervision make a clear or major difference in the preference
of individuals with disabilities for consumer-directed care. The
table below provides an overall summary of factors associated with
consumer preference for self-direction across the studies.
Factors Associated with Consumer Preference
for Self-Direction
Note:
Y = Statistically significant association
N = No statistically significant association
Blank cell = Not studied or reported
Thus, the current research on preference for consumer
direction provides conflicting results, perhaps due to differences
in study methods or the phrasing of questions. Furthermore, there
is the possibility that people who are asked to make a hypothetical
choice would respond differently when presented with an actual choice.
Results from the Cash and Counseling Demonstration in Arkansas indicate
that while certain populations were more likely to express interest
in consumer direction in the survey conducted prior to implementation
of the demonstration project, these populations did not necessarily
enroll in the demonstration once it was implemented. Another limitation
of existing research was the omission of certain populations from
study samples. The AARP study, with its nationwide scope and broad
inclusion of people with disabilities, for example, was limited
by the low percentage of racial and ethnic minorities in the sample.
Even with these limitations, in some areas these
very different studies seemed to point in similar directions:
- Preference differed by age, but that difference
did not alter the fact that a substantial number of people over
the age of 65 expressed a preference for consumer-directed care.
- Among all populations, a continuum of interest
was found in consumer direction, from full interest to moderate
interest to no interest.
- Interest in consumer direction often varied by
race/ethnicity, but results were not consistent. Studies in different
parts of the country indicated different levels of association;
thus, it would be wise to assess local interests rather than making
assumptions for the design of a program in one area based on studies
conducted elsewhere
- Familiarity with consumer direction or experience
hiring or supervising workers was strongly associated with preference
for consumer-directed care.
- People with different types of and severity of
disabilities, including people with cognitive disabilities and
their families and people with severe physical disabilities, were
interested in consumer-directed care.
- Education level rarely makes a difference in preference
for consumer-directed care.
- In some groups, the existence of informal caregivers
or family members who could serve as caregivers was related to
a preference for consumer-directed care.
As a final note, it should be emphasized once again
that the literature was silent on the issue of the preference of
families of children with special health care needs or mental health
consumers for consumer-directed care. In fact, among the populations
included in these studies, the issue of potential psychiatric comorbid
conditions and their impact on preference for consumer-directed
care was never addressed.
B. Does Consumer-Directed Health Care Lead to
Different Outcomes for Consumers?
Outcomes considered included the following:
- Satisfaction with care—for the consumer
and the paid or unpaid caregivers
- Empowerment or control
- Extent of unmet needs
- Health status
- Quality of care
- Safety
These questions are extremely important to policymakers
and consumers, because consumer-directed care challenges the concept
that professional oversight—usually in the form of nursing
or other professional involvement—is needed to protect the
health and well-being of populations who can not perform ADLs or
instrumental activities of daily living (IADLs) themselves. While
the Independent Living movement and advocates for people with physical
disabilities have made important progress in advancing the concept
of consumer direction for individuals with no cognitive impairments,
concerns are still widespread about applying this model to long-term
care for older Americans and individuals with cognitive disabilities.
Concerns are particularly focused on issues of safety, quality of
care, and health status.
We found seven studies addressing these issues that
met our criteria for inclusion. In addition, we report results from
three studies that did not meet our inclusion criteria owing to
convenience samples or inconsistent research methods. However, they
provided information about a population that is often excluded from
other analyses and included a much broader range of outcomes, such
as community integration, and broader quality of life measures.
The Beatty et al., 1998, study was conducted among
individuals with physical disabilities in Virginia who received
personal assistance services through a state-funded program that
used a consumer-directed model. A cap on program participation meant
that some applicants were placed on a waiting list. The study compared
the outcomes for 60 people who received consumer-directed personal
assistance with the outcomes for 32 equally interested people on
the waiting list who received other paid services, primarily through
agencies. The study examined consumer experiences over a three-year
period.
Three of the studies were conducted by Benjamin et
al., who researched Medicaid SSI participants in California’s
In-Home Supported Services Program. Each county that participated
in the study offered a consumer-directed option for in-home support
services, including personal assistance. Some of the counties also
offered an agency-directed program. It is important to note that
consumers were not allowed to choose one form of service delivery
over another—this choice was made by county caseworkers following
an assessment. Consumers who were assigned agency-directed care
were more likely to be socially isolated, to need relatively few
hours of service, or were predicted by county staff to have difficulty
finding their own provider. The consumer-directed option provided
very little assistance to consumers who needed training or support
to make consumer direction work. Individuals were allowed to hire
family members as caregivers in this program. A total of 1,095 people
were interviewed in this random sample study, which was stratified
by age (over or under 65) and by service delivery model (self-direction
or agency direction). Although individuals with cognitive disabilities
could receive services through this program, they were excluded
from the study if they were not able to participate in the interview
protocol. The Benjamin et al., 2000, study included the full sample
of 1,095 agency- and consumer-directed participants. This study
compared outcomes for those who received consumer-directed services
with outcomes for those who received agency-directed services, stratified
by age group. The Benjamin et al., 1999, study examined outcomes
for the 511 individuals who received consumer-directed services
to understand if people who hired family members as caregivers differed
from those who did not, and if outcomes were different for the two
groups. The Benjamin and Matthias, 2001, study also examined outcomes
among 511 individuals who received consumer-directed services, to
determine if there were differences based on consumer age.
The Doty et al., 1996, study was an analysis of findings
from a Louis Harris and Associates survey of elderly personal care
recipients in the Maryland, Texas, and Michigan Medicaid programs.
Michigan offered a consumer-directed long-term care program, Texas
offered agency-directed long-term care, and Maryland offered a hybrid
model in which consumers could hire their own attendants, but county
nurses oversaw and supervised care. The study was conducted using
in-home interviews, but study subjects had to be competent to be
interviewed. This study compared outcomes for program enrollees
across the three states, stratified by the level of consumer-directed
care.
The Feinberg and Whitlatch, 1998, study of family
caregivers, described above, compared the outcomes for those who
used consumer-directed in-home respite with the outcomes of families
who used agency-directed in-home respite.
The Foster et al., 2003, study was conducted among
adults of all ages with physical disabilities who were eligible
for Medicaid personal assistance services in Arkansas. These individuals
enrolled in the Cash and Counseling Demonstration project and were
randomly assigned to consumer-directed or agency-directed services.
People who received consumer-directed services were also offered
counseling to assist them in developing budgets, hiring staff, and
obtaining services. Consumers had the option, which most chose,
to use a fiscal intermediary to pay their caregivers. Each individual
was interviewed at two points, once upon enrolling in the program
and nine months after enrollment. A total of 1,739 individuals participated
in both interviews, with proxies providing responses for approximately
50 percent of the elderly sample and 25 percent of the non-elderly
sample. Proxy interviews were also conducted for deceased individuals
and with consumers who had disenrolled from the program.
The table below summarizes the basic features of
these outcome studies, including sample size, location, target population,
and basic research design. Please see Appendix L for more information
on these studies.
Basic Features of the Outcome Studies
Six of these studies included people over the age
of 65 in their samples (the Beatty et al., 1998, study being the
exception), and six also included adults with disabilities under
the age of 65 (the Doty et al., 1996, study being the exception).
Six of the studies focused primarily on individuals with physical
disabilities and chronic illnesses. Of these, one permitted proxy
respondents. One study was conducted of family caregivers who cared
primarily for individuals with cognitive disabilities. None of the
studies addressed consumer-directed care for individuals with psychiatric
disabilities or families of children with disabilities.
Satisfaction with Services
Five of the studies compared the satisfaction of
people who received consumer-directed personal assistance with those
who received agency-directed services. In each of these studies,
people who received consumer-directed services were significantly
more satisfied with their overall service experience and with specific
aspects of service delivery. It is important to note, however, that
both groups of consumers were mostly satisfied with their care.
For example, in the Foster et al., 2003, study, 90 percent of those
receiving consumer-directed services and 80 percent of those receiving
agency-directed services were satisfied; and in the Doty et al.,
1996, study, more than 90 percent of respondents were satisfied.
The studies used different questions to measure satisfaction.
Generally, a series of questions were combined to form a satisfaction
index. Most of the studies asked about the work performance of caregivers
in a number of areas, such as the ability of consumers to get help
when it was needed, satisfaction with the work schedule of caregivers,
and satisfaction with the way personal care and housekeeping needs
were met. A few of the studies also included measures of consumers’
satisfaction with their control over care and over their lives.
Where feasible, we incorporated assessment of that aspect of satisfaction
into the discussion of empowerment and control as outcomes.
The Benjamin and Matthias, 2001, study and the Foster
et al., 2003, study contained samples large enough to permit authors
to compare satisfaction of different age groups—those age
65 and older and those under age 65. In the Benjamin and Matthias,
2001, study, the older population was more likely to be female,
minority, and less educated than the younger population. The older
group also had fewer ADL needs and slightly more cognitive impairments.
Another important difference between the two groups was that while
older people were more likely to hire family members, younger people
were more likely to hire nonrelatives. Few people in either group
hired strangers. Despite these differences in population characteristics,
in multivariate analysis there was no significant difference between
younger and older groups in satisfaction with services, with one
exception. The younger population was more satisfied with their
provider’s ability to get things done inside and outside the
house than the older group.
In contrast, Foster et al., 2003, found that the
older group in Arkansas was more satisfied with their services than
the younger group. However, over time, younger enrollees in consumer-directed
care became much more satisfied with their services than they were
at the beginning of the study.
Benjamin et al., 1999, examined differences in satisfaction
with care between consumers who hired family members and those who
hired nonfamily members. Those who hired family members were older
and more likely to be Hispanic or Asian than those who hired nonfamily
caregivers. People who hired family members had less formal education
and tended to live with others rather than alone. They were more
likely to fall in the middle range of ADL or IADL needs rather than
at high or low ends. In multivariate analysis, people who hired
family members were significantly more satisfied with their care
than those who hired nonfamily members, perhaps in part because
they had more stable relationships and longer tenure with their
caregivers.
Control and Empowerment
Control and empowerment are two related but slightly
different concepts. For the purposes of this review, control refers
to what a people do or supervise, and empowerment refers to how
people feel about what they do and the environment in which they
live. Empowerment often reflects some level of control, but it is
broader than control. However, in practice, researchers often measured
the same things (choosing your caregiver, satisfaction with the
amount of say in your care); some called these measures of control,
while others called them measures of empowerment.
Three of the studies examined differences between
those who received consumer-directed care and those who received
agency-directed care in relation to the level of empowerment or
control they experienced. A fourth study looked at differences in
empowerment or control between older and younger adults who received
consumer-directed services, and a fifth study examined differences
between those who hired family members and those who hired nonrelatives.
Beatty et al., 1998, found that people with physical disabilities
who received consumer-directed personal assistance were significantly
more satisfied with the control they had over the choice of caregivers
and the authority to direct their care than those who received agency
services. Doty et al., 1996, looked at this issue from a different
angle, and found that older adults who scored higher on four out
of five indicators of consumer direction (a sort of implicit index
of empowerment or control) were more likely to be satisfied with
their care than people who had no indicators of consumer direction.
In logistic regression, the two most important factors associated
with satisfaction were knowing the aide prior to employment and
supervising the aide. Feinberg and Whitlatch, 1998, created an index
that included paying the aide, knowing the aide prior to employment,
scheduling and firing the aide, and making sure the aide did the
job he or she is supposed to do. In multivariate analysis, family
caregivers who scored higher on this index were more likely to have
selected consumer-directed services than agency-directed services,
and were also more satisfied with the care they obtained for their
relative.
Benjamin and Matthias, 2001, compared the experiences
of people age 65 and older with people under age 65 in terms of
their empowerment, measured by the freedom to choose services, satisfaction
with how tasks were done, preference for training and supervising
workers, and desire for a major say in service provision. They found
that younger consumers were significantly more empowered according
to this set of indicators than were older consumers. Empowerment
variables remained significant in multivariate analysis as individual
predictors of satisfaction. Benjamin et al., 1999, used the same
composite measure of empowerment to examine differences between
individuals who hired family members and those who hired nonfamily
members. In multivariate analysis, they found that individuals who
hired nonrelatives were more empowered, in that they were more likely
to supervise their workers and direct their own care.
Unmet Needs
Three studies examined this important outcome: Benjamin
and Matthias, 2001, Benjamin et al., 2000, and Foster et al., 2003.
Benjamin and Matthias, 2001, also examined differences in unmet
needs among those receiving consumer-directed services based on
age. The two areas of unmet needs that were examined in these studies
were assistance with ADLs and assistance with IADLs.
In multivariate analysis, Benjamin et al., 2000,
found that individuals receiving consumer-directed services had
significantly fewer unmet IADL needs than individuals receiving
agency-directed services, but had more unmet ADL needs. However,
it is important to note that the consumer-directed group had significantly
higher impairment, as measured by baseline ADL needs, than the agency-directed
group. Foster et al., 2003, found that individuals receiving consumer-directed
services had significantly fewer unmet ADL, IADL, and transportation
needs than those receiving agency services. In the study that compared
older and younger consumer-directed care recipients, Benjamin and
Matthias, 2001, found that younger people reported higher unmet
IADL needs than older people, but there was no difference in unmet
ADL needs.
Change in Health Status
Only one study examined this outcome. Foster et al.,
2003, found no significant difference in changes in overall health
status between those who received consumer-directed services and
those who received agency-directed services. However, over a nine-month
period, there were some small improvements in important health outcomes
for individuals in the consumer-directed program. Younger people
reported fewer bedsores and less shortness of breath than people
in the agency-directed program, and older people reported fewer
muscle contractures. Although these improvements were not statistically
significant, they were very important clinically.
Safety
Three studies examined differences in the safety
of individuals who received consumer-directed services and individuals
who received agency-directed services. Two of the studies, Beatty
et al., 1998, and Foster et al., 2003, found no difference in safety.
Foster et al., 2003, looked at reports of adverse events, accidents,
falls, or health problems that might indicate inferior treatment.
The Benjamin et al., 2000, study defined safety in terms of provider
behaviors (yelling, threatening, stealing, or alcohol use on the
job), consumer reports of being hurt or neglected, and how safe
the consumer felt. They found that individuals who received consumer-directed
care reported significantly higher safety indicators than those
who received agency-directed care.
Quality of Life
Only Foster et al., 2003, explicitly examined this
issue, and they found that people receiving consumer-directed services
were nearly 20 percent more likely to be very satisfied with their
lives than people receiving agency-directed services. This was true
for individuals over and under the age of 65.
The table below summarizes the outcomes found to
be associated with consumer direction across the studies.
Outcomes Associated with Consumer Direction
Note:
Y = Statistically significant association
N = No statistically significant association
Blank cell = Not studied or reported
Other Relevant Outcomes Research
As noted above, there were three other studies that
did not conform to our criteria for inclusion, but provided outcome
information about an important group of individuals with disabilities
not included in the studies reported above, and a promising model
of consumer direction, referred to as “Self-Determination.”
Conroy et al., 2002, conducted a study of pilot Self-Determination
projects at three Regional Developmental Centers in California for
people with developmental disabilities. The evaluation was conducted
over approximately one and a half years, during which time 63 program
participants and their families (out of a total of approximately
90) were interviewed three times, once before the project began,
once at midpoint, and once at the end of the pilot. In addition,
14 clients of the Regional Center who did not participate in the
Self-Determination pilots completed interviews. Demographics of
pilot program members and comparison group differed significantly
by race/ethnicity, with the 14-person comparison group having fewer
Caucasians and more Latinos and Asians. All of those interviewed
for this study were individuals with developmental disabilities
or their surrogates.
Conroy et al., 2002 (December), conducted an evaluation
of the Robert Wood Johnson Foundation-funded Self-Determination
projects in six states. In a final report to the Foundation, this
study included data on 441 program participants from the six states.
We included results from the two state studies with sample sizes
over 75—Wisconsin and Michigan. Initial interviews with individuals
with developmental disabilities and/or their surrogates were conducted
pre-enrollment in this demonstration, and again one, two, or three,
years post-enrollment.
Conroy et al., 2002 (November), issued an evaluation
report to the New Jersey Developmental Disabilities Council on the
implementation of Self-Determination in that state. More than 300
people with developmental disabilities enrolled in the New Jersey
Self-Determination project. The report, based on 2002 interview
data with 138 people, indicated that some individuals were interviewed
at two points in time, before enrollment in the project and after
enrollment in the project, but it was not clear about how many of
the 138 responses were reflected in reported results or what the
time period was between the initial and follow-up visits.
Despite their limitations, it is instructive to review
the findings from the studies of the Self-Determination programs,
as they address consumer direction for people with developmental
disabilities. The table below summarizes study sample sizes and
demographics. Most of the samples were small compared with other
studies of consumer direction. In all the states except California,
the study participants were mostly white. In contrast with the other
consumer direction studies, the majority of enrollees in the Self-Determination
studies were male.
Study Size and Demographics of the Self-Determination
Studies
In all four states, people with developmental disabilities
experienced greater empowerment and control during the time they
participated in the Self-Determination projects. This was measured
through an instrument called the Decision Control Inventory that
asked 35 questions about the extent to which life decisions, both
major and minor, were made by paid staff or by the consumer and
their unpaid friends or relatives. The areas of most significant
change were different in each state, but the overall score was significantly
higher from pre to post-enrollment. For example, in Michigan, the
greatest gains were in options to hire and fire support personnel,
choice of agency support personnel, choice of people to live with,
choice of case manager, and choice of house or apartment. In Wisconsin,
the gains were in how consumers spent their funds, choice of case
manager, and choice of service agency.
Three of the studies found significant improvements
in quality of life during the course of the demonstration projects,
and three of the studies found significant increases in community
integration. Quality of life was measured by asking people with
developmental disabilities or their surrogates to rate 14 items
before and after enrollment in the project. Sampled items included
“health,” “what I do all day,” “seeing
friends,” “safety,” “treatment by staff,”
“food,” and “privacy.” Community integration
measures included the number of times individuals did any of a set
of 16 activities in the past month (visit with friends, go to a
movie, bank, shopping, and sports event) and access to transportation.
In three of the four states, participants in the Self-Determination
project reported significantly more community integration over time,
while in the fourth state community integration declined, although
not significantly.
Two of the studies examined health status and found
no change in health over time. One study looked at safety and found
a significant improvement over time. The Michigan and Wisconsin
studies examined the impact of the demonstration on caregivers through
a survey on the quality of their work lives. In Wisconsin, direct
care staff experienced a significant positive change in the quality
of their work lives, while in Michigan, staff experienced no significant
change.
In summary, as with the consumer preference studies,
it is difficult to come to definitive conclusions about outcomes
because the research covers such diverse populations and asks different
questions, in different ways. On the other hand, the evidence does
point to the fact that people who receive consumer-directed services
are more satisfied with their care, feel more empowered, and experience
a higher quality of life than individuals who receive agency-directed
services. The satisfaction outcomes, however, should be viewed with
some caution, as satisfaction with community-based services tends
to be very high, regardless of the model. Furthermore, in two of
the studies—Foster et al. and Beatty et al., the sample who
used agency-directed services were individuals who had already expressed
an interest in consumer direction, by virtue of enrolling in the
Cash and Counseling Demonstration or being placed on a waiting list
for consumer-directed care. Perhaps it was no surprise that they
were less satisfied with their care since they were not yet directing
it.
C. Is Consumer-Directed Health Care Cost-Effective
or Cost Neutral?
Examination of the cost-effectiveness of consumer-directed
health care raises complex issues. Different results can emerge
depending on the methods that are used to determine costs. For example,
in examining different models of personal assistance, some researchers
look simply at the direct cost of providing each mode of service
while others look at the impact each model has on utilization of
the full range of long-term care and supports. A few researchers
have looked even more broadly at total costs of health and long-term
care for people with disabilities given different models of care.
The broader the approach, of course, the more difficult it becomes
to access and analyze the different funding streams that pay for
the different components of care. Thus, much of the research focuses
on the cost of the intervention itself.
Another issue in determining cost-effectiveness in
the short term is how to predict what might ultimately happen to
an individual in the absence of community-based services. Would
the individual actually be institutionalized? If it were possible
to be sure that an individual would be institutionalized absent
community care, one could easily document the cost-effectiveness
of community-based services. Absent knowledge of the probability
of averted institutional cost, it is difficult to document the cost-effectiveness
of enhanced community-based care to the system.
We identified nine studies that met our criteria
for inclusion that measured cost outcomes. The nine studies examined
the following aspects of cost:
- Four studies examined the cost-effectiveness
of home- and community-based services compared with nursing home
care, primarily for elders and people with physical disabilities.
- Two studies examined the cost-effectiveness
of community-based care compared with institutional care for people
with developmental disabilities.
- Two studies documented the differences
in expenditures under consumer-directed models compared with agency-directed
models.
- One study examined the substitution effects
of paid services provided by long-term care insurance on the provision
of unpaid care.
Comparing Home- and Community-Based Service
Costs to Nursing Home Costs
One of the requirements of the Medicaid HCBS Waiver
Program is cost neutrality. Home- and community-based services can
be covered only if they cost no more than institutional care. Four
studies examined the cost-effectiveness of home- and community-based
services on a systems level, including in their analyses the likelihood
that Waiver participants would enter a nursing home.
The Kemper et al., 1986, study was a meta-analysis
of the federally funded National Long-Term Care Demonstration, known
as Channeling, which served as a prototype for Home- and Community-Based
Waiver Programs. Ten programs tested one of two models for financing
and delivery of services. The first model was an informal, referral,
and case management model, with very limited funding to purchase
direct services. The second model expanded services and established
a pool of funds to allocate these services based on consumer needs.
In this model, the role of the case manager was expanded to include
authorization of services for specific individuals. Evaluations
were conducted at each site, using a randomized control group who
received no intervention. Costs included in the analysis included
expenditures by Medicaid, Medicare, and the demonstration projects
themselves.
The Kemper et al., 1987, study was another meta-analysis
of home- and community-based demonstration projects funded through
Medicaid or Medicare. Kemper et al., 1987, began by looking at evaluations
of 16 demonstrations that offered case-managed community care to
elders with disabilities from the early 1970s through mid-1980s.
From this group, they selected six evaluations that used randomized
control designs and included fairly complete cost data. These demonstration
projects provided different combinations of nonmedical services
such as homemakers, personal care, transportation, and home-delivered
meals. Some served all ages of adults with disabilities, rather
than restricting services to older people. Sample sizes ranged from
139 to 6,326, the largest being the Channeling Project, which was
one of the six demonstration projects included in this meta-analysis.
Vertrees et al., 1989, compared home- and community-based
Waiver services costs with nursing home costs for Medicaid participants
in the aged and disabled HCBS Waiver Programs in Georgia and California.
The samples consisted of everyone enrolled in the Waiver Programs
(1,241 people in Georgia and 2,107 people in California) as well
as comparison groups of people living in the community who were
not enrolled in the Waiver. The populations were stratified into
five groups based on ADL and IADL impairment levels, whether or
not they lived alone, and enrollment in Waiver or comparison group.
Vertrees et al., 1989, conducted a life table analysis to determine
the likelihood that people would enter a nursing home or hospital
in a given length of time in each of the groups. The analysis relied
on data from Medicaid claims for both nursing homes and Waiver services,
as well as information about hospital admissions.
Weissert et al., 1997, also compared costs of home-
and community based Waiver services with nursing home costs, but
for a very different program model. They analyzed the Arizona Long-Term
Care System, a statewide capitated long-term care program funded
by Medicaid. All of Arizona’s elderly and disabled Medicaid
HCBS Waiver Program participants and nursing home residents were
enrolled in this managed long-term care program. Data on the universal
sample of Waiver participants (N = 20,361) were then compared with
two national data sets, one a random sample of elderly nursing home
residents and the other a random sample of elderly community residents,
because of the absence of any control or comparison group in the
state. Weissert et al., 1997, used logistic regression to identify
risk factors for nursing home placement by merging the national
data on community and nursing home residents and then applied this
analysis to the Arizona Waiver population.
The table below summarizes the different research
studies.
Results of the Research Studies on Cost
Three of the four studies found that Home- and Community-Based
Waiver Programs did not, for the most part, prevent or delay nursing
home admission for program participants compared with comparison
or control groups. The programs did not, therefore, reduce system
costs. Using multivariate regression analysis, Kemper et al., 1986,
found that control group members entered nursing homes at the same
rate as members of each of the two treatment groups. Kemper et al.,
1987, found that in five of the six demonstration programs, participants
entered nursing homes at the same rate or less often than the control
groups, but those differences were not significant. However, in
South Carolina, participants in the demonstration program entered
nursing homes at a significantly lower rate than controls. To see
if this trend was sustained, researchers conducted the same analysis
three years later, and found significantly lower nursing home use
at this time as well. In terms of cost, most of the programs increased
costs to the system overall, while the South Carolina program broke
even. Alone of all the programs, the South Carolina program required
program participants to complete a nursing home preadmission screen
and qualify for admission. Thus, it appeared that strict targeting
of services to individuals with significant likelihood of nursing
home placement might explain the difference. Similarly, Vertrees
et al., 1989, found that while the costs per participant in both
California and Georgia were significantly lower than the costs per
nursing home resident, neither of the programs prevented nursing
home admission for some of their participants. Thus, from a systems
perspective, neither program was cost neutral.
Weissert et al., 1997, by contrast, estimated that
Arizona saved over $4.6 million by substituting home- and community-based
services for nursing home care, or more than 35 percent of nursing
home costs. In the Arizona Waiver Program, eligibility for home-
and community-based services was very tightly controlled, with approximately
15 to 20 percent of applicants denied entry into the program each
year owing to insufficient medical or functional need. In addition,
the cost of the first three months of nursing home care was covered
by the acute care managed care system, and thus Home- and Community-Based
Waiver applicants had to demonstrate the need for at least three
months of nursing home care to be eligible for participation in
the Waiver. This meant that participants in this program would have
been highly likely to enter nursing homes without home- and community-based
services. This probability changed the cost-effectiveness ratio
for this particular study.
In summary, it appears that while the Waiver Programs
all cost less per participant than nursing home care, the impact
of home- and community-based services on the prevention of nursing
home admissions was negligible unless Waiver services were highly
targeted to individuals most likely to enter nursing homes. On the
other hand, most of these studies also examined the impact of home-
and community-based services on quality of life and satisfaction
outcomes, and found significant differences between treatment and
control or comparison groups, with treatment groups experiencing
better outcomes.
Comparing Home- and Community-Based Service
Costs to ICFs/MR or Institutional Costs for People with Mental Retardation
and Developmental Disabilities
Two studies in Minnesota examined differences in
cost between home- and community-based care and institutional care
for people with mental retardation, developmental disabilities,
and related conditions. In contrast to the programs described above,
these were evaluations of programs that were implemented to move
people out of (rather than avert or substitute for entry into) institutions.
Therefore, there was no need to estimate which of these individuals
would be likely to move into an institution—the nature of
the program itself meant that the individuals met the criteria for
institutional care.
Stancliffe and Lakin, 1998, conducted a study of
116 people with mental retardation and related disorders who moved
from institutions to the community through the Minnesota Home- and
Community-Based Waiver Program. The experience of this group was
compared with that of 71 individuals who remained institutionalized.
The institutionalized sample lived in large state-operated ICFs/MR,
while the Waiver sample lived in smaller ICFs/MR or households/group
homes financed by the Waiver Program. There was no significant difference
in demographic or functional characteristics between the community
sample and the institutionalized sample. Data for the cost analysis
were derived from state-funded residential and day program expenditures
and individual contributions made from personal income, SSI, SSDI,
and state-administered room and board supplements.
Hewitt et al., 2000, also conducted a study of the
Minnesota Home- and Community-Based Waiver Program, using data from
Medicaid cost reports on institutional and Waiver services, as well
as Medicaid state plan services. Data were analyzed for 6,548 individuals
with mental retardation and/or developmental disabilities, a universal
sample of both institutional and community-based program participants.
Both studies found that the costs of serving people
in the community were significantly lower than the costs of serving
people in institutions. Stancliffe and Lakin, 1998, found that institutional
costs were 36.4 percent higher than community residence costs. Through
regression analysis, they found that individual characteristics,
including the level of impairment, predicted neither staffing patterns
nor expenditures. This was important because staff wages and benefits
typically constitute 82 percent of expenditures in institutions
or community settings for people with mental retardation (Stancliffe
and Lakin, 1998). In this study, the direct care staff-to-client
ratios in the community were higher than in the institutions, suggesting
that the community programs were less expensive without sacrificing
client care.
Hewitt et al., 2000, found that Home- and Community-Based
Waiver Program costs/person/year were 78 percent of institutional
costs/person/year, but rose in proportion to the individual’s
level of disability. The study report also noted that as the number
of people living in large state institutions declined from 1,022
to 72 between 1992 and 1999, residents remaining in the ICFs/MR
tended to have more serious health-related needs than others.
Comparing the Costs of Consumer-Directed
Health Care with Agency-Directed Health Care
Two studies examined difference in costs between
consumer-directed and agency-directed health care services. The
first was a small study of family caregivers of individuals with
cognitive disabilities who used a direct-pay system for obtaining
in-home respite in California, while the second was a large-scale
study of the Cash and Counseling Demonstration project in Arkansas.
The Feinberg and Whitlatch, 1998, study used cost data from the
respite program to conduct the cost analysis, and did not look at
expenditures for other health care services. The expenses of in-home
respite care for the families who used the consumer-directed model
were compared with expenses for in-home respite for families who
used an agency-directed model.
Dale et al., 2003, conducted a comprehensive cost
analysis of the Cash and Counseling program in Arkansas, based on
Medicaid claims data. Expenditures for the treatment group, who
received Cash and Counseling services, were compared with expenditures
for a control group over a 12?month period. A second 12-month period
was examined for approximately half the sample who were “early
enrollers” in the demonstration.
Feinberg and Whitlatch, 1998, found that there was
no significant difference between the consumer-directed group and
the agency-directed group in expenditures for in-home respite. The
consumer-directed group received significantly more respite hours
per month than the agency-directed group, but this was offset by
lower costs per hour for the consumer-directed group.
Dale et al., 2003, found that the expenses for personal
assistance were twice as high for Cash and Counseling participants
as for the control group, largely because the control group did
not get the services they were authorized to receive. Among control
group members who were new to the program, 50 percent did not receive
any of the personal assistance that they were authorized to receive,
compared with only 8 percent of the newly enrolled Cash and Counseling
participants. In the first 12 months of the program, the increased
costs for personal assistance among demonstration participants was
partially offset by reduced costs for nursing homes, home health,
and inpatient hospital care. After two years, however, the difference
in cost between the treatment and control groups was insignificant.
By reducing institutional and acute medical care, the Cash and Counseling
demonstration managed to increase the availability of personal assistance
services for both older and younger adults with disabilities without
changing the overall cost of care.
Substitution of Formal Care for Informal
Care
Despite research documenting the distress and hardship
that informal care creates for the many, mostly female, family members
who provide this care3, one policy concern about providing
financial assistance for community-based long-term supports is that
the individuals who provide free care will reduce their services
once paid care is available. This concern is raised most frequently
in regard to programs that allow family members to serve as paid
caregivers. We identified two studies that addressed this issue.
The 1986 study by Kemper et al, described above, examined the role
of informal caregivers among two treatment groups—those who
received case management services and those who received case management
and additional long-term support services—compared with control
groups.
3Cohen, Feinberg, and Whitlatch
(2002) found the prevalence of depressive symptoms among family
caregivers was very high in both the agency- and consumer-directed
models.
The second study, Cohen et al., 2000, examined the
experiences of informal caregivers of adults with private long-term
care insurance once the long-term care insurance took effect. Samples
were derived from eight of the largest long-term care insurance
companies in the country, and interviews were conducted with both
consumers and caregivers. Consumers had to be at least 65 years
old, live in the community, and have a policy that covered both
home care and nursing home care. The table below summarizes key
features of these studies.
*Did not say how the insurance companies selected
their samples.
Both studies found that people who lived in the same
household as the consumer provided most informal care. Kemper et
al., 1986, found that the amount of informal care provided to individuals
in the two treatment groups did not differ significantly from the
amount of care provided to individuals in the control group. The
treatment group that received both case management and enhanced
community-based services received slightly less assistance from
nonhousehold members than control group members, but the difference
was not significant.
Cohen et al., 2000, found that the majority of informal
caregivers of privately insured individuals were spouses of the
consumer, and that while two-thirds of caregivers reported no reduction
in the level of informal care provided once paid care was available,
this was less true of adult children who were caregivers. Formal
care did not substitute for informal care based on severity of disability.
Cohen et al. also found that the burden on caregivers was significant.
Nearly two-thirds of caregivers reported that their caregiving affected
their ability to work. However, the presence of paid care reduced
the level of stress for 66 percent of caregivers.
Summary
While satisfaction and quality of life were markedly
improved for individuals with disabilities who moved from institution
to community care and from agency-directed services to consumer-directed
services, findings concerning other outcomes were more mixed. Cost-effectiveness
of consumer direction was particularly hard to document, except
in cases where it is easy to demonstrate that the alternative would
be institutionalization.
It is important for policymakers to consider cost-effectiveness
in the context of quality of life and the ability of a program to
meet client needs. If the Arkansas Cash and Counseling demonstration
cost more than the alternative because more than half of the control
group did not receive the agency-directed services for which they
were authorized, does that make agency-direction the better model
because it costs less? This question is posed rhetorically here,
but the same issue emerges in other cost studies. A parallel question
emerges from studies that looked at supplementation of unpaid by
paid care. While paid care may create a minor substitution of paid
for unpaid care, the research shows that the substitution effect
is insignificant where it appears at all, and the quality of life
benefits are substantial. Thus, here too, minor differences in cost
may be balanced by differences in effectiveness, if the latter is
defined to include areas in which quality improvements were seen.
VI.
Lessons
Learned About Implementing
Effective Reforms and Strategies
A. Barriers to Implementation
Most of the information discussed below came from
key informant interviews conducted in the winter of 2003–04
and from the policy research literature. Not surprisingly, informants
had a wide range of insights to share on barriers to implementation
of health reforms.
The Institutional Bias of Medicaid
Key informants repeatedly cited a bias in favor of
institutional care in Medicaid regulations and program implementation.
In fact, individuals with long-term care needs could receive Medicaid
benefits only by entering an institution until the 1980s, when states
were first permitted to develop HCBS Waiver Programs for people
at risk of institutional placement or offer personal care as a state
plan service. From 1990 through 2002, the percentage of total Medicaid
long-term care expenditures allocated to community-based services
nationally grew from 13 percent to 30 percent (Crisp et al., 2003).
That means the allocation of Medicaid funds for community-based
services and supports is still less than one-third of the allocation
for institutional care.
In fact, as informants pointed out, the underlying
assumption of institutional care as the baseline model still survives
in the requirement that states demonstrate cost neutrality before
they can receive CMS approval for HCBS Waiver Programs that allow
for community-based long-term care. States must also demonstrate
cost neutrality to obtain the 1115 Waivers that allow people with
disabilities to receive cash allowances or budgets to manage their
own care or hire relatives as caregivers. Key informants cited the
complexity of measuring cost-effectiveness, noting (1) limits on
the availability and flaws in the reliability of cost data, (2)
hidden and hard-to-measure costs of the current system related to
unfilled service needs, (3) the inconsistent application of measures
across programs and states, and (4) the overall expectation of immediate
cost savings. On the other hand, no state has to demonstrate cost
neutrality in order to cover care in a nursing home, developmental
center, or ICF-MR. As one informant said, “It’s hard
to operate programs as flexible as Cash and Counseling and Self-Determination
in an environment as rigid as Medicaid. In fact, everything we do
in these programs is a trick to get around the fundamental nature
of Medicaid.”
Finally, the nature of HCBS Waiver Programs is that
they are generally age- or disability-specific. For example, HCBS
Waiver Programs may be targeted to older adults, younger adults
with physical disabilities, people with developmental disabilities
or traumatic brain injury, or people with AIDS. Thus, the possibility
of offering consumer-directed personal care services to people across
the lifespan and spectrum of disability requires either a whole
series of Waivers, or a state plan amendment that offers a model
of personal assistance that can accommodate varying levels of interest
and capacity to self-direct. Several key informants acknowledged
that CMS has taken some steps to address this institutional bias
through a variety of initiatives.
Labor Supply and Quality
The shortage of direct care personnel in the long-term
care system is a major issue across the spectrum of services: institutional,
agency-based, and self-directed. Consumer informants related many
stories of difficulties encountered in their efforts to find dependable
personnel. In part, this shortage reflects the economics of the
long-term care marketplace. Wages for direct care workers are among
the lowest in any industry. Different sectors of the long-term care
delivery system find themselves in stiff competition for a limited
supply of labor, and payment rates for consumer-directed workers
are often at the low end of the spectrum. When qualified staff is
available (aside from consumers’ own family or friends), it
is often difficult to retain them given the lack of advancement
opportunities and persistently low wages. Many direct care workers
are employed without health insurance or other benefits that most
American workers need and expect.
With the supply of direct care workers clearly documented
as inadequate to meet current demands, demographic trends as the
baby boom generation ages will only exacerbate this shortage. A
number of informants expressed the opinion that the sheer demand
for personnel and the inadequacy of traditional supply to meet this
demand will promote consumer direction, with its capacity to draw
consumers’ families and friends into the workforce, as a response
based on expediency, if not principle.
Fiscal Issues
Fiscal issues that impede implementation of consumer-directed
or -oriented health care include the following:
- State budget constraints and the imperative
felt by state governments to reduce service costs immediately;
- The front-end expenses involved in the
design and implementation of new programs;
- Concerns about the “woodwork”
effect when new services are offered; and
- Gaps in the community long-term care infrastructure
that inhibit consumer-directed care.
Fiscal Uncertainty
A number of key informants cited the uncertainty
of federal budget priorities, the general economic climate, and
stresses on state Medicaid budgets as major barriers to advancing-consumer
oriented reforms and consumer-directed services. Consumer informants
illustrated this concern by telling personal stories. For example,
a mother of a child insured by Medicaid and enrolled in a Waiver
Program related that the personal budget determined for her child
was originally set at an amount that was less than the cost of caring
for her child in an institutional setting, but allowed her to obtain
the personal assistance she needed to augment the care she and other
family members could provide. At the time of the interview, she
had just been advised that the total budget for the care of her
daughter was about to be cut in half due to a state initiative to
“rein in” Medicaid spending.
Medicaid, in addition to being the primary payer
for health care services for low-income people with disabilities,
serves as a safety net for adults and children with disabilities
who buy in to Medicaid for supplemental coverage of services and
supports not available through other insurance. Consumer key informants
related the serious psychological impact that any threat or actual
reduction of Medicaid coverage has on people for whom alternative
options do not exist.
Start-up Costs
Many key informants, particularly researchers and
program administrators, discussed the need to invest resources to
design, implement, and evaluate consumer-directed programs and services,
and the challenge that this presents. At a minimum, programs for
people with long-term care needs require the same investment of
resources as program initiatives for the general population. More
often, they require higher levels of staffing and other resources,
owing to the inherently complex needs of the populations.
The prevailing approach of public and private agencies
is to serve the greatest number of people at the lowest possible
cost. When state and federal administrators are faced with setting
priorities in the context of fiscal realities, the relative rate
of return for populations that may benefit from the initiatives
at issue here is small compared with initiatives targeting the broader
population without long-term care needs. In addition, one informant
suggested that many states view experimentation with alternative
programs as too burdensome an undertaking and feel they do better
to stand by and learn from other states’ initiatives.
Unmet Needs—Expected Woodwork Effect
An often-cited barrier to the development of consumer-directed
programs is the concern that they will open up a floodgate of demand
for services, thus increasing overall cost to the system. There
is an underlying assumption that the current system does not meet
the community-based long-term care needs of people who require these
services. Many individuals rely on families and friends to remain
in their homes and communities when the more formal, provider-driven
support structure is insufficient or fails them. It is a widely
held belief that the promotion of consumer-directed care will force
provider and payer systems to acknowledge the role of unpaid family
and friends in the provision of care and to provide reimbursement
and other supports for that role. As one informant said, “States
offset costs by maintaining the status quo of unmet need.”
Infrastructure Inadequacies
Reliable and fully accessible support services such
as transportation, meal preparation and delivery, and housing are
essential to individuals with disabilities who want to live in the
community but have significant ADL or IADL needs. These services
are part of the community infrastructure that makes consumer-directed
care feasible. Many informants relayed instances in which the lack
of support services minimized or completely prevented their participation
in consumer-directed options. The promotion of consumer direction
undoubtedly adds to the demands on already stressed and inadequate
support systems.
Provider Resistance
Consumer direction represents a divergence from the
traditional strategies for safeguarding the health and safety of
consumers, handing responsibility that used to belong to professional
providers over to the consumer and nontraditional caregivers, including
family members and friends. Some institutional providers and home
care agencies argue that independent caregivers pose significant
safety risks that must be addressed in consumer-directed models.
In addition, some provider organizations argue that the consumer-directed
movement is taking patients away from traditional care settings,
such as home health agencies, and thus threatening their viability.
Overall, there is significant resistance and distrust within many
traditional provider organizations toward consumer-directed models
of care for individuals with disabilities.
Institutional opposition to consumer direction often
emerges in terms of presumed health and safety risks of consumer-directed
care for all consumers, especially consumers with cognitive disabilities.
One key informant expressed concern about who would be held responsible
and what actions would be taken if a consumer employed a personal
care assistant more often to accompany him/her to the movies than
to assist with health-related ADLs. In an agency-directed model
of care, this choice would not arise. Other informants argued that
simply having a choice might in fact contribute to higher overall
quality of life.
Consumer and Caregiver Education and
Skill Building
All models of consumer-directed care assume a transfer
of responsibility and risk from provider organizations to the consumer
and his/her caregiver. Consumer understanding of the options available
within consumer direction and the associated responsibilities are
critical to the advancement of responsible consumer-directed care.
Consumers must be able to understand their options and be aware
of support available to assist them in managing their choices. The
absence of education and skills training can be a significant barrier
to consumer-directed care.
While many individuals with disabilities have a strong
interest in gaining more control over their health care services
and engaging in consumer-directed care, many do not have the information,
experience, or skills needed to set goals, develop care plans, and
take responsibility for hiring, training, supervising, and monitoring
staff. Cash and Counseling programs, for example, require consumers
to hire and fire, supervise, develop schedules, manage budgets,
and determine the delivery of care. Many consumers have no previous
experience with such tasks and need basic skills training before
they can effectively assume responsibility and fully participate
in consumer-directed care programs. In addition, consumers need
to be apprised of the full range of their options for care before
they can be expected to make optimal choices. One informant commented,
“Individualization should not be limited to what a person
says they want; they need to know what is possible.”
Caregivers, often family and friends of consumers
who provide care independent of any formal arrangements, assume
different levels of responsibility across the many manifestations
of consumer-directed care models. They, too, need orientation and
skills training to care for an individual with a disability through
a consumer-directed model of care.
Key informants identified the general lack of orientation
and awareness among long-term care providers as a barrier to consumer
direction and home- and community-based alternatives. One key informant
described an experience that is common among people with disabilities,
who often learn about management and self-care after an adverse
event occurs. For example, consumers and their caregivers may learn
self-management and prevention for pressure sores or urinary tract
infections after acute care episodes rather than as part of their
orientation and training for consumer-directed care.
Lack of Common Definitions
According to many of the key informants, the absence
of good outcome or cost data is a barrier to the expansion of consumer-directed
care. The inconsistency with which terms are used and concepts defined
across disability groups and service systems contributes to this
situation. Although consumer-directed care is applicable across
the spectrum of disabilities, the language used to capture the concept
of consumer direction varies among disability groups.
First, the term “consumer-directed care”
is defined and understood in various ways. As a result, programs
are designed and implemented differently with different objectives.
In reviewing the literature and conducting key informant interviews,
the terms “consumer-centered care,” “person-centered
services,” “self-direction,” “personal care
assistance,” and others were sometimes used as synonyms for
consumer-directed care, and sometimes as distinct terms. People
using these terms assume their applicability to certain groups of
disability or age categories.
There is also lack of clarity and, in some cases,
outright debate among key stakeholders, including policymakers,
program directors, and consumers, about which segments of the population
should be defined as having a disability. Even within disability
groups there is disagreement about the specific conditions that
should be included. Some consumers feel stigmatized by being labeled
“disabled” and reject services targeted for people with
disabilities. Many individuals with arthritis, for example, resist
identifying themselves as people with disabilities and accepting
specialized services even if their functional needs are similar
to those of individuals whom they would identify as disabled.
As a result of variation among programs in their
definitions and disability inclusion criteria, research comparing
program outcomes is particularly challenging. Policymakers and researchers
struggle to find commonalities between programs that allow for meaningful
analysis. A key informant stated, “The poor definitions, notions,
and organization of consumer direction and the implicit assumption
that the notions are antithetical to one another impede intelligent
discussion and research on the matter.”
The Need for Reliable and Meaningful
Outcome Measures
Several key informants stressed that measuring outcomes
for those enrolled in consumer-directed programs is both challenging
and highly subject to interpretation. First, there is debate about
the outcomes that are most important to measure through such research.
Second, enormous variation in design of programs, populations served,
level of consumer interest, and outcomes measured makes it difficult
to identify best practices in consumer-directed care. Very specific
challenges arise in relation to measurement of consumer satisfaction,
the most frequently assessed outcome of care. Consumers may be fearful
that if they complain about the services they are receiving their
services will be “taken away” or negatively influenced
in retribution. One informant stated, “In so many instances,
people have such limited life experience and such low expectations,
they are satisfied with programs that can really stink.” It
is difficult for programs to identify areas for improvement or gauge
if the services are actually meeting enrollees’ needs under
such circumstances.
B. Facilitators of Implementation
It was easy to elicit information about barriers
to implementation. Key informants, many of whom struggle consistently
with challenges in this field, were less prompt to identify facilitators.
However, several factors were mentioned that have facilitated or
are expected to promote consumer-directed care.
Federal Initiatives
Several new federal initiatives may spur the implementation
of consumer-directed and -oriented care:
- Streamlining of the Waiver process and
improved communication with states through Independence Plus;
- Real Choice Systems Change and Medicaid
Infrastructure Grants; and
- The proposed Money Follows the Person Rebalancing
Initiative.
CMS has implemented the Real Systems Change Grant
Initiative to help states implement community-based care systems
through partnership with community organizations. These grants support
the development of programs that enable individuals to move out
of institutions into the most integrated community setting appropriate
to their individual needs and preferences. Real Systems Change programs
also offer consumers choice in regard to living environments, care
providers, the types of services they use, and the way these services
are delivered (CMS Web site, 2004). This is the first major federal
initiative to support consumer-oriented and -directed care across
the spectrum of disability and across the lifespan, and as such
facilitates the implementation of new community-based care systems.
The joint support of CMS and the Administration on
Aging of Aging and Disability Resource Centers in 16 states is intended
to help those states develop “one-stop shopping” programs.
These programs, which work at the community level to help people
make informed decisions about their service and support options,
serve as the entry point to the long-term care system. Eligible
populations for these programs include people over 65 and at least
one additional population (such as people with serious mental illness,
developmental disabilities, or physical disabilities). Funds can
be used to coordinate or redesign information systems, to provide
consumer education, or to facilitate access to care across multiple
federal, state, and local programs (CMS Web site, 2004). This program
has the potential to address some of the consumer education barriers
to community-based care, and it also begins to break down some of
the age-related barriers to care.
Foundation Support for Pilots, Demonstrations,
Start-up Costs, and Evaluation
As mentioned previously, foundations have provided
significant financial support for pilot projects, multistate demonstration
projects, start-up costs for new initiatives, and program evaluation.
Of particular note is the role of the Robert Wood Johnson Foundation
(RWJF). RWJF funded the pilot Self-Determination program in New
Hampshire, and then expanded the pilot to create demonstration initiatives
in more than two dozen states. RWJF was also instrumental in working
with CMS and contributing financial support to the Cash and Counseling
Demonstration. Other consumer-directed and -oriented initiatives
have received start-up funding with foundation grants, and foundations
play an important role in funding program evaluations.
Advocacy and Policy Leadership
Systems change requires leadership, and leadership
has been an important factor in promoting consumer-directed and
-oriented care. Often the leadership has come from disability advocates
working in partnership with policymakers in a particular state.
These partnerships have been important in overcoming the many barriers
to implementation mentioned above. Less frequently, policymakers
are the leaders and work to develop partnership with consumer advocates.
While not the norm, this is, in fact, what happened in at least
one of the Cash and Counseling Demonstration states.
Research and Evaluation Results
The results of research and program evaluations such
as those described earlier in this report are invaluable in promoting
consumer-directed and -oriented care. Faced with financial barriers,
provider resistance, and widely held concerns about safety and quality,
proponents of consumer-directed and -oriented care need all the
evidence they can muster to address the myriad issues that arise
in efforts to change delivery systems. Satisfaction, quality of
life, and consumer empowerment outcomes are a very important foundation
for these efforts. But perhaps more important, research documenting
the comparative safety of consumer-directed care, the maintenance
or improvement of health status and function, and the lack of substitution
effects can be powerful facilitators and agents of systems change
able to confront the prevailing interest groups or public impressions
that impede change.
VII.
The
Role of Federal Agencies in Promoting Research
Federal agencies play an important role in promoting
research on consumer-directed and consumer-oriented health care.
The Centers for Medicare and Medicaid Services, the Office of the
Assistant Secretary for Planning and Evaluation, and the National
Institute on Disability and Rehabilitation Research play leading
roles in this area. What follows is an account of federally sponsored
outcomes research, as well as some of the major current policy research
initiatives. Please note that this is not an exhaustive list of
all research in this area, as some research activities are not publicized
until the results are final.
National Institute on Disability and
Rehabilitation Research (NIDRR)
NIDRR, a branch of the Office of Special Education
and Rehabilitative Services (OSERS) at the U.S. Department of Education,
sponsors demonstration projects and research related to disability
(NIDRR Web site, 2004). NIDRR recently funded a study on the availability
and quality of personal assistance services for people with disabilities
provided by formal and informal caregivers (Rey, 2003). In January
1999, NIDRR also committed $1.6 million to a four-year project to
support the National Resource Center on Supported Living and Choice
for People with Mental Retardation and Developmental Disabilities
at Syracuse University in New York. The resource center will document
innovative policies and practices in the areas of self-directed
support services, self-determination, self-advocacy, ownership of
a home, and participation in the community (NIDRR Web site, 2004).
NIDRR has sponsored several small studies of consumer-directed care
(sample sizes under 120), including the following:
- A study that explored satisfaction among
individuals with physical disabilities who were receiving consumer-directed
personal assistance services (Beatty et al., 1998);
- A study that examined choice of health
plan by people with mobility impairments (O’Day et al.,
2002); and
- An evaluation of level of empowerment,
consumer contacts with family, cost, and degree of community integration
among deinstitutionalized individuals with disabilities (Stancliffe
and Lakin, 1998).
U.S. Department of Health and Human Services
DHHS has broad national responsibility for promoting
and protecting the health of American citizens, with a particular
focus on vulnerable populations (DHHS Web site, 2004). DHHS subdivisions
have funded most of the federally sponsored studies of consumer-directed
health care. One was a major study that examined differences in
outcomes between people who received agency-directed long-term care
and people who directed their own in their levels of consumer control,
satisfaction, and unmet needs. Subdivisions of DHHS that are active
in this field are listed below, with a description of their research
activities in consumer-directed health care for people with disabilities.
Centers for Medicare and Medicaid Services
oversees the Medicare and Medicaid programs, SCHIP, the Health Insurance
Portability and Accountability Act (HIPAA), and many of the New
Freedom Initiative programs (CMS Web site, 2004). CMS has supported
the following evaluations of consumer-oriented care:
- The National Evaluation of the Medicaid
Home- and Community-Based Services Waiver Program, which measures
the impact of Waiver Programs on quality of life, quality of care,
utilization, and cost (DHHS Report 100-97-0019, 2001);
- The evaluation of the Medicare Coordinated
Care Demonstration, which implements disease management and case
management strategies in an effort to improve outcomes for individuals
with chronic conditions (CMS Web site, 2004);
- Evaluations of utilization of outpatient
services, level of control or empowerment, satisfaction, change
in health status, unmet needs, and caregiver burden in health
care programs for individuals who are dually eligible for Medicaid
and Medicare (Kane et al., 2001, 2003);
- An evaluation of the level of control or
empowerment, satisfaction, and unmet needs in Medicare managed
care nursing home residents (Kane et al., 2002);
- An evaluation of utilization, satisfaction,
cost, quality of life, changes in health status, and feasibility
of CMS’s End State Renal Disease managed care demonstration
(Dykstra et al., 2002); and
- An evaluation of PACE that measured utilization
of outpatient services, hospitalizations and nursing home admissions,
satisfaction, consumer and caregiver quality of life, and changes
in health status, functional status, and mortality of PACE enrollees
(Chatterji et al., 1998).
CMS also maintains a repository of Promising Practices
in Home- and Community-Based Services in order to help states improve
services for people with disabilities (CMS Web site, 2004).
The Office of the Assistant Secretary for Planning
and Evaluation (ASPE) is the principal advisor to the Secretary
of DHHS and “is responsible for major activities in the areas
of policy coordination, legislation development, strategic planning,
policy research and evaluation, and economic analysis” (ASPE
Web site, 2004). The Office of Disability, Aging and Long-Term Care
Policy (DALTCP) within ASPE evaluates many of the DHHS programs
that serve individuals with disabilities. ASPE- and DALTCP-supported
outcomes studies include the following:
- An evaluation of the Channeling Demonstration
(Kemper et al., 1988) that measured the comparative costs of community
versus nursing home care, quality of life, and burden experienced
by caregivers of individuals who received community-based care;
- A study of choice of plan, caregiver burden,
and caregiver characteristics among informal caregivers of elders
with disabilities and long-term care insurance (Cohen et al.,
2000);
- A study that measured quality of life and
ability to “age in place” at an assisted living facility
(Phillips et al., 2000);
- An evaluation of the California in-home
supported services program, the largest consumer-directed personal
assistance program in the country (Benjamin et al., 1999, 2000);
- A study comparing the outcomes of consumer-directed
and agency-directed care in three states (Doty et al., 1996);
and
- Studies to evaluate process and outcomes
of different aspects of the Cash and Counseling demonstration
project (Foster et al., 2003; Mahoney et al., 1998; Phillips et
al., 2003).
Administration on Aging (AoA) is one of
the largest providers of home- and community-based care to the elderly
in the United States (AoA Web site, 2004). AoA jointly funds the
Cash and Counseling program and evaluation along with the Office
of the Assistant Secretary for Planning and Evaluation and the Robert
Wood Johnson Foundation (Cash and Counseling Web site, 2004). The
Cash and Counseling Demonstration has been implemented in three
states (Arkansas, New Jersey, and Florida), and an additional $7
million grant has recently been approved that will expand the program
into as many as ten more states (Cash and Counseling Web site, 2004).
AoA is currently collaborating with CMS on a grant program that
promotes consumer-oriented, coordinated, long-term care (see Collaborative
Efforts section below).
Administration on Developmental Disabilities
(ADD) is the federal agency accountable for implementing the
Developmental Disabilities Assistance and Bill of Rights Act of
2000 (DD Act), which calls for ADD to involve individuals with developmental
disabilities in the planning and design of health services and to
ensure that these individuals receive the necessary services and
supports (ADD Web site, 2004). To our knowledge, ADD has not sponsored
research on outcomes of consumer direction.
Agency for Healthcare Research and Quality (AHRQ)
is the health services research arm of DHHS. AHRQ describes its
mission as improving, “the quality, safety, efficiency, and
effectiveness of health care for all Americans” (AHRQ Web
site, 2004). AHRQ has sponsored conferences at which experts from
different disciplines have explored patient-centered teams and models
of care that are sensitive to consumer preferences and expansion
of consumer choice (TRIP Web site, 2004; AHRQ Web site, 2004). AHRQ
also funded an outcomes study that examined the impact of Consumer
Assessment of Health Plans (CAHP) performance information on choice
of health plan by Medicaid beneficiaries (Farley et al., 2002).
However, this research was not focused on the health care of people
with disabilities.
Substance Abuse and Mental Health Services Administration
(SAMHSA) is responsible for improving the quality and availability
of services for individuals with mental illness or substance abuse
(SAMHSA Web site, 2004). The Center for Mental Health Services (CMHS),
which operates within SAMHSA, funded the Consumer-Operated Services
Program Multi-Site Research Initiative, which examined the outcomes
of consumer-operated services for people with mental illness. These
services included “drop-in centers, peer counseling, advocacy,
training, peer support groups, and vocational and housing programs”
(BU (Boston University) Web site, 2004). This study measured “the
level of empowerment, housing, employment, social inclusion, satisfaction
with services, costs, and cost-offsets” (BU Web site, 2004).
This project has not yet produced published results.
Health Resources and Services Administration
(HRSA) has as its mission the improvement of access to quality
health care for all Americans (HRSA Web site, 2004). Within HRSA,
the Maternal and Child Health Bureau sponsors demonstration and
evaluation projects to improve care for children with special health
care needs. Some of the major areas of interest include care coordination,
development of medical homes, and managed care for children with
special health care needs. Although we found many policy reports
and case studies related to these topics, there were few published
outcome studies.
Congressional Budget Office (CBO)
The CBO supports the U.S. Congress by providing analyses
needed for economic and budget decisions (CBO Web site, 2004). While
CBO conducts cost analyses in various areas of health care, including
mental health parity and expanded access to health services (CBO
Web site, 2004), the agency does not have a major presence in research
around health care.
Congressional Research Service (CRS)
CRS is another support agency to Congress that provides
research and analyses on all legislative issues (CRS Web site, 2004).
CRS has looked at long-term care policies in ten states to provide
background information and analyses of the different systems to
help Congress make informed decisions regarding long-term care policies
(Walters et al., 2003). CRS also examined trends in institutional
care and home- and community-based care for individuals with disabilities,
as well as consumer-directed care under Medicaid and mental health
parity (Penny Hill Press Web site, 2004). These studies are reports
of trends in the field rather than outcome studies.
Government Accountability Office (GAO)
GAO is the audit, evaluation, and investigative branch
of Congress (GAO Web site, 2004). GAO has produced several reports
that provide background and trend information on consumer-directed
care and look at several key features of these models, such as case
management and cost. GAO research in this field has focused more
on policy issues than outcomes.
National Institute of Mental Health (NIMH)
NIMH is an arm of the National Institutes of Health
that funds research on mental health and behavioral disorders (NIMH
Web site, 2004). NIMH has funded one outcome study that examined
access, satisfaction, and quality of life among adults with different
levels of insurance coverage who had substance abuse and mental
health problems (Wells et al., 2002).
Collaborative Federal Groups
The table below lists interagency research collaborations
and provides information about which federal agencies are or were
involved, the outcomes they have measured, and the context in which
the outcomes were measured.
*CSAT = Center for Substance Abuse Treatment.
Federal agencies also collaborate on other efforts
to evaluate consumer-directed health care. The Interagency Committee
on Disability Research, coordinated by NIDRR, was created to promote
collaboration across federal agencies engaged in disability and
rehabilitative research programs. Membership on this committee includes
the Rehabilitation Services Administration, the departments of Education,
Veterans Affairs, and Transportation, the National Institutes of
Health and Mental Health, the Indian Health Services, and the National
Science Foundation. CMS, AoA, SAMSHA, ASPE (and RWJF) funded a Consumer-Directed
Care Conference in June 2001. This conference gave experts in the
field of consumer-directed care an opportunity to share experiences
and lessons learned in the implementation of different models of
consumer-directed care. AoA and CMS are also collaborating on a
grant program to fund state efforts to develop “one-stop shopping”
for the elderly and at least one other population with significant
health care needs who use long-term care services in the community
(AoA Web site, 2004). The programs must provide education and counseling
on care options, care coordination, and services to help clients
plan ahead for their long-term service and supports needs”
(AoA Web site, 2004). As part of this initiative, states are required
to evaluate their programs.
VIII.
Recommendations
to Policymakers
The recommendations are divided into two parts: recommendations
related to policy and program design and implementation and recommendations
related to research. In addition, weoffer one core recommendation,
applicable to both research and program implementation.
The policy and programmatic recommendations encourage
the expansion or replication of strategies that are supported by
current research or that are consistent with current research and
supported by experts in the field. Few strategies in the area of
consumer-directed or consumer-oriented care for individuals with
disabilities have been subjected to sufficiently rigorous research
to be characterized as “best practices” or “standards
of care.” We present this set of recommendations nonetheless,
because policymakers and other stakeholders are faced with decisions
every day and need to know which of the options available are most
likely to be optimal, even when definitive research is lacking.
Recommendations related to research identify strategies
to enhance the quality of information available to policymakers,
program designers and managers, funders, and the general public
as they consider options for consumer-oriented care for individuals
with disabilities. In addition to our research recommendations,
we have included key informant responses to the question, “If
you could fund one research project concerning long-term care for
people with disabilities, what is the topic you would look at?”
Please see Appendix M for their responses.
The main audience for these recommendations is government
at both federal and state levels. Research recommendations may also
be relevant to foundations and other research organizations. Program
recommendations are relevant to government agencies, private agencies,
foundations, policymakers, and program managers.
A. Core Recommendation
Consumers, including both individuals with a full
range of disabilities and those who provide their care, have the
most direct and immediate stake in recommendations for both research
and programs. Informed consumers will most often and most consistently
advance the cause of adequate research in this area and demand programs
that are shaped by the best available research findings.
One overarching recommendation, aimed at consumer
groups, foundations that support consumer advocacy, and government
agencies, is the inclusion of consumers representing a wide range
of disability perspectives 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. To make this recommendation meaningful, it is critical
that the issue of diversity be understood in its full breadth. Research
suggests that options and outcomes vary widely depending on the
nature of an individual’s disability and on demographic factors
such as age, gender, race/ethnicity, and language. An inclusive
approach would reflect this broad understanding of diversity and
ensure inclusion of a correspondingly broad range of consumer perspectives.
It would also include youth with disabilities and parents or caregivers
of children with special health care needs in decisionmaking not
only about child-focused programs, but also about programs that
serve adults and will serve their children in future years. Government
agencies to which this recommendation is most directly addressed
are those within the Office of Special Education and Rehabilitative
Services in the Department of Education; and the Social Security
Administration, the Centers for Medicaid and Medicare Services,
the Substance Abuse and Mental Health Services Administration, and
the Health Resources and Services Administration within the Department
of Health and Human Services.
B. Policy and Program Recommendations
Establish a locus of responsibility for programs and
services related to health and well-being of individuals with disabilities
within the federal government.
The need for such an entity emerged from both the
literature review and key informant interviews. The intent here
is not a new clearinghouse or interagency council, but rather a
focal point for programmatic responsibility in the area of health
and well-being of individuals across the spectrum of disability.
Most immediately, this could be the entity to take
on the recommendations made above: to convene and staff consensus
groups, to provide language related to consumer participation for
other agencies to incorporate into their funding announcements,
to identify unmet needs and reshape programs to fill those needs.
Such an entity does exist in relation to children with special health
care needs (the Title V Children with Special Health Care Needs
Program in the Maternal and Child Health Bureau of the Health Resources
and Services Administration), but it does not exist for adults or
elders.
Here again, a reasonable case could be made for adding
this central coordinating role to any number of existing federal
agencies. After considering different options, we would assign the
role to HRSA. In part, this choice reflects the agency’s experience
with evaluation and focus on vulnerable populations (HIV-infected
individuals, low-income families, mothers and infants at risk, and
children with special health care needs). Additionally, the agency
is responsible for the impact of health programs and policies on
the well-being of the overall population. We note that although
the agency plays a central role in health care improvement efforts,
it does not administer major entitlement programs. From our viewpoint,
this is an advantage, since it reduces any real or perceived conflict
of interest on issues, which might draw on the resources of an entitlement
program to reduce overall systems costs.
In part, this call for a proactive government role
in shaping services reflects the finding that the market has not,
on its own, created the continuum of services required to meet consumer
needs. Shortages of trained personnel, inadequacy of accessible
housing, and inadequacy of health care options in the community
may all make community-based services functionally unavailable even
to individuals who want them and are theoretically eligible to receive
them. A dedicated unit of government could take on these challenges,
serving as both a focal point for identification of gaps in services
and responsive planning and as a voice for creative thinking in
these areas.
Make response to critical personnel shortages a first
order of business for this newly identified unit of government.
Without competent, affordable community-based caregivers,
consumer orientation and direction are meaningless. Widespread shortages
already place programs at risk; an aging population will widen the
gap between need and supply. Federal agencies should convene a work
group to address quantity and quality of available personnel. This
group should identify models for recruitment, training, and supervision
of personnel, including models that offer consumers a range of roles
in each of those tasks.
Ensure broad consumer representation in program planning
and implementation.
Here again, goals are both to ensure that programs
reflect the needs and preferences of consumers with a range of disabilities
and to ensure that the process of designing or implementing a new
program does not offend consumers to the extent that evaluation
is compromised.
Incorporate opportunities for choice wherever possible,
even in institutional settings and certainly in programs that are
not explicitly defined as consumer oriented or directed.
The single finding that emerged most firmly across
studies was that consumers feel best about programs and have the
most positive outcomes generally when they have real options and
can choose the degree or type of self-direction that matches their
preferences. Given the variability among models of consumer direction
that produced equal levels of satisfaction among those who wanted
consumer direction (even the Cash and Counseling programs differed
substantially in terms of the nature and extent of self-direction
permitted), it may well be that the fact of having choices and having
one’s choices listened to is an important variable in and
of itself.
This recommendation has implications well beyond
programs that are explicitly defined as consumer-directed or -oriented
health care. Even institutional sites such as nursing homes may
offer consumers more or less choice about daily activities, social
interactions, living arrangements, food, and exercise. Findings
suggest that degree of choice should be considered an important
measure of quality in any program model.
While choice is critical, it should not be advanced
at the expense of quality or accountability.
Flexibility is elevated to a principle here, but
with consumers, rather than states or agencies, as the intended
beneficiaries. The option to participate in a consumer-directed
program should not be traded off against accountability for entitlement
programs. If, for example, unnecessary bureaucracy slows the Medicaid
Waiver process, that issue can and should be addressed without removing
critical safeguards that make coverage available to a broad population
of individuals with disabilities.
Do not build expectations of cost savings into start-up
of consumer-directed or -oriented health care.
While cost saving is always a relevant issue in publicly
funded programs, study data suggest fluctuation in the early years
of program implementation. In some cases, costs are incurred in
retooling programs, retraining staff, recruiting new staff, and
recruiting program participants. In other cases, there is an early
increase in costs when new models lead to identification and treatment
of long-hidden problems. It is logical to expect these start-up
and transition costs; new programs should be designed to accommodate
them.
One additional point about program costs is that
it is important to look not just at savings, but also at allocation
of costs as new models are set up. Findings in relation to mental
health parity suggest increases in the overall cost of care in start-up
years in some cases, but shifts in the allocation of costs from
inpatient to outpatient settings. It is also important to note that
where total increases were seen in these models, they also reflected
increased program penetration rates. In other words, parity permitted
treatment of a greater number of patients on an outpatient basis
as opposed to a smaller number of patients on an inpatient basis.
The values placed on this trade-off are a matter of public policy;
from a technical perspective, the important issue is that the full
picture of shifting costs be taken into account.
Break down barriers and create opportunities for cross-fertilization
between narrow and arbitrarily defined disability sectors.
The apparent failure to study consumer-directed models
among individuals with mental health diagnoses, the existence of
Title V for children with no equivalent program for adults, the
development of the medical home concept for children with no equivalent
development in care for adults, and the implementation of PACE models
for elders long before equivalents were thought of for younger people
with disabilities all reflect the historical impact of narrow, categorical
funding streams. Narrow funding streams have often led to the development
of discrete industries that provide services to narrowly defined
population groups. While some target groups may differ in the nature
and extent of services needed, there is much similarity across groups
and much to be learned across categories. One role of the government
entity suggested above should be the integration of systems of care
based on functional needs, so that service needs, rather than diagnosis
or age group, drive service options, and lessons learned from the
experience of one population group are available to others. But
in general, thinking about new programs should start from the premise
that programs should be available to people across the disability
spectrum and designed with the flexibility to accommodate diverse
needs.
C. Research Recommendations
There are inherent challenges in researching consumer-directed
and -oriented care. The concepts themselves are abstract and relative:
there is no such thing in the real world as absolute consumer direction,
and there are few care models in which the consumer exerts no control.
The programs that seek to operationalize these concepts may have
limited funding for evaluation and are often under political or
consumer pressure to put new models in place in less time than it
takes to conduct good baseline measurement or ensure a good evaluation
design. And even with good design, elimination of bias is challenging.
It is clearly impossible to randomly assign those who do not wish
to control their own services to a program that requires them to
control their services, and equally difficult to eliminate all consumer
control over services provided to those who seek autonomy.
The practical impact of research in this field has
been limited by these challenges. Furthermore, the field suffers
from inconsistent definitions of predictors and outcomes across
studies, vague explanation of variables in reports on specific projects,
and in many cases, study designs that do not support credible generalization.
This makes it difficult to compare findings across studies or to
generalize based on specific studies. Recommendations concerning
research address these limitations.
The recommendations that follow require the designation
and authority of a federal entity responsible for coordinating disability
research across the public and private sectors—those that
have an explicit role in policy, program administration, and evaluation
and those that affect the lives of individuals with disabilities
indirectly. A reasonable case can be made for any one of several
existing federal agencies to serve as the central entity responsible
for coordinating research on disability and health. Our recommendation,
based on a review of current missions and research capability, is
for this role to be served by the Office of the Assistant Secretary
for Planning and Evaluation within the Department of Health and
Human Services. The broad mandate of this office, its interest and
efforts to date in shaping and conducting research and data policy
in this arena make it an appropriate locus for the proposed role—to
shape and guide all of the disparate efforts into a coherent research
agenda and effort, and apply the knowledge base gained from the
research to develop and design policy and the allocation of funds
for maximum benefit.
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.
Informants told us forcefully that research would
be much more useful, despite inherent challenges, if consensus were
achieved around key terms related to consumer-directed care. They
called for establishment of a coherent taxonomy that could form
the basis for the evaluation of diverse programs serving the broad
spectrum of disability.
To that end, a small national work group made up
of consumers, researchers, service providers, and government officials
should be convened to grapple with terms used to characterize predictors
and outcomes in this field. Such terms as “consumer-oriented,”
“consumer-directed,” “disability,” “satisfaction,”
“personal care assistance,” and “choice”
could be addressed, making it possible for researchers to tailor
studies to particular interventions while promoting comparability
across and clarity within individual studies.
The intent of this recommendation is the development
of a set of definitions for use by all federal agencies and federally
funded contractors and grantees. It is important to note that the
definition of disability crafted through this process is not meant
to imply that all federal programs must have the same eligibility
criteria. Some programs (for example, Supplemental Security Income)
may seek to define eligibility narrowly in order to target scarce
or costly benefits. What this recommendation does imply is that
rather than choose completely unrelated criteria, benefit programs
set their eligibility criteria to include a subset of those fitting
the broad research definition.
As a second step, this group or
a follow-up group should go on to identify a menu of indicators
for each term defined.
Develop protocols for federally funded evaluation
studies.
Given clear definitions and meaningful indicators,
the next step is to develop guidelines for the design of research
in this field. Such issues as the collection of baseline data, the
identification of target populations, options for avoiding use of
proxy informants, strategies for analysis of data when proxies are
unavoidable, and the identification and use of comparison groups
could be addressed. Here again, this could be the same or a new
group (perhaps with greater research expertise).
Consumer advisors to this project and key informants
were both concerned about studies of cost-effectiveness. Protocols
guiding the evaluation of 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 this area follow well-defined guidelines.
Cross-disability consumer involvement should be an
integral component of program evaluation from the very start.
The definition of relevant outcomes is not solely
a technical matter. It is also a matter of what is subjectively
important to different stakeholder groups. Consumers may place different
weight on outcomes in different domains, and their priorities may
differ from those of other stakeholders. Different consumer groups
(e.g., parents of children with special needs as compared with adult
consumers) may weight outcomes differently. Therefore, when developing
protocols, diverse consumer representation should be part of all
stages of program design, including identification of goals and
objectives and design of evaluation studies.
Consumer inclusion in research may also minimize
adversarial situations that have arisen in cases when consumers
who were invited to participate in pilots of consumer direction
were then assigned to comparison groups. Several key informants
commented on evaluation studies that they felt had limited validity
because consumers who found themselves disappointed in this fashion
were too angry to fairly assess the services they did receive. Informants
suggested that involvement of consumers in the design and implementation
of evaluations, while challenging from both logistical and scientific
perspectives, could ultimately improve the validity of study findings
and outcomes.
Include measures of quality of life among outcomes
studied in program evaluation.
Consistent with including a consumer voice in the
design of research, key informants suggested that funders encourage
or require evaluation studies to address quality of life as a key
outcome of consumer direction. Several pointed out that satisfaction
with services might not capture the full impact of consumer direction.
If, they noted, agency-directed services are the only alternative
to institutionalization in one community or population studied,
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. The solution proposed was
that consumers be involved in a process to define quality of life
indicators, and that those indicators be included in research to
permit more refined comparison of different models of community-based
service.
Further support for this recommendation comes from
the observation that health outcomes, which are closely linked to
quality of life conceptually and may be of high salience to both
consumers and providers, may be so influenced by other factors that
outweigh the impact of services (age, disability status, income,
long-term work and life experiences, family and social relationships)
that they do not reflect important differences that can influence
health in the long run. Measuring quality of life may be a way to
understand how the individual experiences his or her current environment,
which in turn may influence health in the long term.
Include measures of mental health in evaluation studies
on consumer-directed care.
The literature review revealed no studies that reported
data related to the mental health of clients as an outcome of consumer-directed
care. Given the important relationship of depression to overall
health and well-being (found in the National Health Interview Survey
and other health studies) and the significance of depression treatment
as a cost to systems, this constitutes a critical gap in current
knowledge. Measures of depression and other negative and positive
mental health outcomes (ideally defined via a process with consumer
input, as discussed above) should be incorporated into future studies
across the field.
Include individuals with primary mental health diagnoses
in evaluation studies.
Here again our findings were absolute: not a single
study looked at the impact of consumer-directed care on individuals
with mental illness. While this omission primarily reflects the
lack of health care interventions targeted to individuals with mental
health diagnoses, it is likely that some of those included in studies
we reviewed had identified or unidentified mental health conditions.
Studies may well have missed an opportunity not only, as noted above,
to look at mental health status as an outcome of consumer direction
or orientation, but also to look at mental health status as a predictor
of the impact of innovative models of care by failing to screen
evaluation respondents on mental health status. Given the fragility
of deinstitutionalization for mentally ill individuals and the inherent
relevance of psychosocial factors to outcomes for this population,
it seems appropriate for impact-of-service models to promote new
kinds of psychosocial interaction between caregivers and care recipients
with mental health needs to be documented carefully.
Include children with health care needs and their
families in evaluation studies.
None of the studies identified for this report looked
at outcomes of consumer-directed or consumer-oriented long-term
care for children, despite intense interest in the implementation
of a medical home approach to pediatric care that shares many of
the values and some of the strategies of consumer direction. A research
taxonomy and protocols for evaluation are needed; ideally, what
is done around medical home would be fully integrated with research
on efforts to improve care for adults.
Strengthen the nation’s consumer-directed research
effort’s to include a stronger focus on family.
Federal agencies’ research efforts should recognize
America’s families, not only in the role of caregivers, but
also in the planning, management, and delivery of services and supports
sustaining the consumer-directed efforts to empower individuals
with disabilities to achieve their potential and enjoy the fruits
of their civil rights like other able-bodied citizens.
D. Conclusions
While each of these recommendations may be understood
in isolation, there are clearly themes that run through them and
have important implications for research and practice in consumer-oriented
services for people with disabilities. The themes may be summed
up as follows:
- 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 goals requires the designation
or establishment of an oversight agency within government, responsible
for identifying needs, convening planning groups, and ensuring
the broadest possible continuum of service options.
Taken as a whole, these themes and the recommendations
they encompass imply a major shift in the way government, private
agencies, and even to some extent consumer organizations think about
disability. It implies a shift from a narrow diagnosis-focused approach,
with a one-size-fits-all (or at best a limited) range of service
options to a cross-disability, lifespan approach in which funds
are available to meet individualized needs. It implies a shift in
the role of government from focused oversight of tightly defined
program options to a broader responsibility for ensuring that a
set of definitions, protocols, and strategies is 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 the 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.
IX.
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Appendix A.
Consumer-Oriented
Health Care Advisory Board
* Resigned for health reasons
Appendix B.
Roles
and Responsibilities of the Consumer Advisory Board
on Consumer-Oriented Health Care
- Add value to the process, products, quality,
and validity of research offered to the National Council on Disability;
- Offer guidance and relevance to the research
process, design, problem-solving, priorities, and direction taken;
- Ensure the integrity of the approach undertaken
throughout the engagement;
- Assist with linkages to local and national
contacts, networks, organizations, literature, and research;
- Engage in a collaborative partnership at
critical intervals of the project during scheduled conference
calls and individually as needed;
- Promote co-learning and capacity building
among staff and members; and
- Actively participate in the knowledge gained
to inform the recommendations to the National Council on Disability
to improve the health and well-being of consumers with disabilities.
Appendix C.1.
NCD
National Consumer Advisory Board
Meeting Minutes
June 30, 2003
I. Introductions of Members and Staff
Joe Flores, from Texas, an MSW of 28 years, person
with a physical disability, working at the Texas Department of Health.
Denise Payne, wheelchair user, born with CP, a self-advocate
from Florida, very involved with Medicare bureaucracy and access
to needed equipment.
Charlie Carr, from Massachusetts, founder and Executive
Director of independent living center, person with physical disability,
involved in access to primary health care for persons with disabilities
in managed care systems.
Linda Horton, woman living with HIV in DC, works
at the AIDS Alliance for Children, Youth and Families, with a focus
on Medicaid.
Marilyn Rohn, person with mental illness from New
Mexico, involved in issues of Medicaid and Medicare and Housing,
on State Council for Consumer Affairs.
Kay Tucker, from California, a woman with bipolar
disorder, very involved with passage of Parity Bill in state and
cultural competence, recently attended a conference on evidence-based
practices at the California Institute for Mental Health.
Polly Arango, Lou Brothers and Owen McCusker did
not participate in the conference call.
The HDWG project team of Carol Tobias, Debby Allen,
Kate Brown, Regina Murphy, and Sarah DuRei participated in the call.
II. Joint Review of Roles and Responsibilities
Kate Brown read the roles and responsibilities as
provided in the package of materials sent to the membership in advance.
All members accepted roles and responsibilities as read. An invitation
was extended to all members to be in touch with the project team.
III. Overview of the Project Goals
Carol Tobias provided an overview of the ten-month
engagement, explaining the primary focus as the identification of
best-evidence practices and to contribute to the knowledge about
the factors that facilitate or impede the implementation of these
practices. Carol reported on the focus of our research in this phase
of the project:
- Laws and regulations that promote consumer-oriented
reforms and practices; and
- Current programs and practices that are
documented to be effective or show promise, without the benefit
of evidence-based evaluation.
Carol provided an inventory of the reform areas identified
to date and invited the board to add to the list and/or critique
those identified. Board members offered the following additional
areas:
- Medicaid Buy-In Programs—protection
of benefits when returning/maintaining work/income;
- Provider Education on disability and cultural
competence (including Dentists);
- Inpatient mental health treatment practices
of restraints, medications and seclusion—research on the
least restrictive practices;
- The New Freedom Initiative, incorporating
Olmstead;
- Barriers to health care created by HIPPA;
- Benefits Counseling;
- PCA Payment Reforms;
- Jail Diversion Programs—dual diagnosis;
- Minority Sensitive Programs;
- Micro-Entrepreneurship for self-employed;
and
- Mental Health Parity.
Carol then explained our research efforts to identify
those reform efforts that have been evaluated with outcome measures
identifying those reforms that work or don’t work. Carol read
a list of identified reform outcomes (intermediate and long-term)
that “work” and asked the membership to comment on the
value of them and once again, offer input. The membership offered
the following additional outcomes:
- Improved Self-Esteem;
- Work and Continuity of Work;
- Family and Child Satisfaction and Function;
- Transitional Programs for Adolescents;
- Reduction in Homelessness;
- Healthy Lifestyles;
- Cultural Competence;
- Prison Diversion; and
- Reduced ER/Hospitalizations.
IV. Review of Preliminary Research Findings
Carol appraised the membership of our findings to
date—lots of articles and reports in four general categories:
opinion pieces, program descriptions, policy studies (usually qualitative
case studies, lessons learned), and outcomes research. Our emphasis
and concentration will be focused on the policy studies and outcomes
research. Carol listed off the outcomes evidence research directly
related to consumer-directed or -oriented care identified to date.
She invited the membership to assist with identification of evidence
for HIFA, Olmstead, Respite, Care Coordination, and medical home—areas
the project team has yet to find.
Debby Allen summarized the reforms identified specific
to children and families as Home- and Community-Based Waivers (Katie
Beckett), Family-Centered Care and Medical Home concepts, and Parent
Empowerment/Partnering legislative initiatives.
In the interest of time, the group was advised of
the next scheduled call date for December and asked about their
interest in meeting sooner. It was unanimously agreed that an interim
meeting would prove useful. An October date will be scheduled.
Follow-up
- Cultural Competence Keynotes, Sergio, UC
Fresno and Stanley, UC Davis; Kay Tucker
- UMASS Medical Provider Education Project,
Charlie Carr
- National Empowerment Center, Lawrence,
MA
- “Double Trouble in Recovery”
in Vermont—dual diagnosis, Marilyn Rohn
- New Hampshire Follow-Along Program, Kay
Tucker
- San Francisco Peer Counseling and Support
Program, Kay Tucker (Pat Deegan)
- Women’s Wisdom Project, Sacramento,
Kay Tucker
- Michigan Program for Dual Diagnosis, Linda
Horton
- Commonhealth Evaluation, Velvet Miller
- WRAP Program, Marilyn Rohn
Appendix C.2.
NCD
National Consumer Advisory Board
Meeting Minutes
November 14, 2003
I. Introductions of Project and Membership
In light of new members joining the board since the
first meeting, a general overview of the project and brief introductions
were made. In explaining the scope of work, it was explained that
the HDWG was engaged by the NCD to conduct a study of the research
to identify best-practice outcomes or emerging evidence practices
regarding consumer direction and consumer orientation; essentially,
what is known to be effective, ineffective, why, and how. The distinction
between consumer direction (long-term care and supports) and consumer
orientation (broad initiatives to expand access such as TWWIIA)
was offered. In the initial phase of work undertaken since the first
board call, the HDWG has conducted a massive literature search to
discover the body of evidence-based outcomes, resulting in a limited
number. At this time, the HDWG has identified the knowledge, gaps,
and conflicting evidence. The primary purpose of the call today
is to gain input from the membership on the findings to date and
direction of future qualitative research to inform the final product
due to NCD.
Two new members, Peter Thomas and Patty Osborne Shafer,
began the introductions followed by Polly Arango, Owen McCusker,
and the HDWG project team of Carol Tobias, Debby Allen, Kate Brown,
and Kate Tierney. Other members who joined the call later included
Charlie Carr, Denise Payne, and Kay Tucker. It was noted that Lou
Brothers had resigned due to failing health. Also, Marilyn Rohn
and Joe Flores were unable to participate in the call.
II. Summary Review of Outcomes Literature
Carol led a summary review of the outcomes literature
and findings in the two major topic areas: long-term care and managed
care (See documents). For long-term care, while satisfaction and
quality of life are markedly improved for those individuals with
disabilities who move from institution to community and from agency-directed
services to consumer-directed services, other outcomes are more
mixed. However, consumer choice and control improved in all of the
consumer direction models, and safety and perceived quality of care
never declined. All other outcomes—cost, impact on caregivers,
community integration, unmet needs, health status, and access to
health care services—met with mixed results.
Owen asked about the defining characteristics of
consumer-directed verses agency-directed and suggested that it is
important to describe the importance of viewing these distinctions
along a continuum. He further noted that one’s needs and desires
are dependent on an array of variables at any given point in time
and explained the ethical and safety concerns and conundrums when
advocating for persons desiring consumer-directed services. Patty
echoed Owen’s point regarding language and terminology and
noted the parallels of like concepts and issues when reviewing the
medical literature. Patty further enumerated that treating persons
with disabilities as a whole group contributed to the lexicon challenges,
in that it doesn’t allow for distinctions and differences
in choices, control, shared decision-making, etc. It was acknowledged
that there is a large degree of shared decision-making within self
direction. Charlie acknowledged that the “real” differences
are between being institutionalized and in the community and having
services such as personal assistance versus none.
The discussion turned to discrepancies in defining
“good” outcomes—between the researchers and the
consumers, in addition to the variability and individuality of consumer
interest in/ability with control. In all instances of consumer direction,
consumers need to assess what they are being asked to do. The membership
concurred with a fundamental principle that consumer involvement
in defining the research outcomes is critical.
Peter commented on the inadequate budgets in the
Cash and Counseling programs and the lack of incentives for provider
participation.
Carol then directed the discussion to the findings
of the literature on managed care.
She reported that persons with disabilities have
similar experiences in problems accessing care and in delays to
getting care with Medicaid and Medicare managed care as experienced
in fee-for-services systems of care. In some studies, managed care
enrollees had better access to specialists and prescriptions, although
other study results indicated better access to care in fee-for-service
arrangements. Results were also mixed when reviewing enrollee relationships
with providers in managed care.
Regarding consumer choice of health plan and the
impact of information provided influencing the choice of plan, the
literature indicates that none of the information provided was particularly
helpful or useful. In one article, it was not read by over half
of the sample. In several studies, cost and prescription coverage
influenced choice of enrollment into Medicare HMOs.
Lastly, managed care enrollees in voluntary managed
care programs (SSI and dually eligible) were generally more satisfied
with managed care, used more outpatient services, and were more
likely to report improvements in health status than their fee-for-service
counterparts.
In response to the findings reported, a reference
to the dismal effect of consumer education was made and the influence
of the regulatory environment on this effect—the ongoing tension
between regulation and implementation of programs. Charlie commented
on the Massachusetts experience involving consumers in the design
and implementation of its managed care program as being critical
and successful. Owen cited Family Care of Wisconsin as an example
of consumer involvement in the evaluation outcomes of the program.
Polly offered the Title V program in Florida as another example
of consumer investment.
Carol inquired of Owen whether any evaluations had
been conducted on the Partnership. Owen suggested contact with Steve
Landkamer of the Department of Health and Family Services in Madison.
Carol mentioned the modification of CAHPS for disability populations.
Peter asked, “Who are the researchers?” Primary researchers
identified include Medstat, Abt Associates, Robert Wood Johnson,
ASPE, Urban Institute, Triangle Research, Rand, Kaiser, Mathematica,
etc. It was suggested that THE HDWG look at DeJong and Freiden for
possible outcomes literature.
III. Long-Term Care Initiatives—State-by-State
Matrix
Kate solicited feedback on the usefulness and applicability
of the sample LTC matrix provided. Members were interested in receiving
more information on the nature of the program initiatives listed.
It was also suggested that this kind of information is useful to
consumers.
IV. Key Informant Interviews
Debby reviewed the strategy and general approach
proposed by the HDWG for the next major phase of the project, key
informant interviews. She summarized the purpose as seeking input
to confirm the discovery of outcomes, affirm the controversial and
ambiguous findings, and seek interpretation regarding the topic
of study and emerging practices such as mental health parity, the
medical home concept, and the Ticket-to-Work reform effort.
The membership was unanimous in their support of
the most meaningful and critical input to come from consumers themselves—those
who had first-hand experience with the services, programs, and reform
initiatives. Polly recommended the Family Voices model of researchers
working directly with consumers to develop and interpret the research.
In response to a request for explanation of the medical
home concept, Debby explained the concept as a “hub”—one
endorsed by the AAP, emphasizing comprehensive, coordinated, continuous,
and consistent services on an individualized basis involving partnership
on the parts of parents and providers of children with special health
care needs. Polly indicated that the practice is actually working
in places across the country and may indeed be transferable to other
populations. She also noted the distinction from disease management.
Kay cited a model, the Invisible Children’s Project in Sacramento,
as another family-centered care model.
Debby introduced the notion of “managed parity”—a
coined phrase to acknowledge that in every article studied on the
topic of mental health parity, the advent of parity was associated
with either the simultaneous introduction or intensification of
managed care. No evidence of parity causing more than a short-term
and small increase was found in the literature. Some plans experienced
rapid and dramatic reductions in cost.
No studies reviewed indicated that cost containment
resulted in decreased access or quality. A shift in location of
care away from inpatient to outpatient settings and increased “treatment
prevalence” (percentage of persons receiving care) is shown.
Quality was addressed in a limited way (mostly administrative) and
generally scored well as a measure. More substantive patient outcomes
are needed. It was noted that cost increases have been cited as
a reason for resistance to parity; yet evidence shows it is cost
neutral.
Kay shared her observation of consumers receiving
employment support services from the agency where she is employed
as a group clearly in need of mental health support and estimates
that ninety-five percent are not receiving it. She remarked on the
significance of the increased treatment prevalence as important.
Another example of an emerging practice for further
pursuit with key informants is the Ticket-to-Work program. Following
a brief explanation of the program, Charlie indicated that the state
of New York is offering ILCs incentives to enroll their clients
into the program and the importance of Medicaid Buy-In provisions
for the program to work. Peter suggested that the program is in
dire need of enriched incentives for provider participation. Owen
made note of the limited number of states using the Medicaid Buy-In
provision with program implementation. Charlie suggested that the
HDWG contact Connie Garner in Senator Kennedy’s office for
more information on the Ticket-to-Work implementation.
The HDWG requested members to identify the stakeholders
for the key informant interviews. Peter suggested that the HDWG
provide the membership with a grid to organize the contacts into
categories of Capitol Hill Staff, Policymakers, Provider and Consumer
Representatives, Researchers and Administrators. In response to
the HDWG’s request for specific questions to be posed and
answered in the key informant interviews, members offered the following:
- How cultural competence fits with these
initiatives;
- Direct care workforce shortage;
- Lack of standards for personal care assistance;
- Individual competencies to managed care;
- What the findings/accomplishments are in
the early implementation of Real Choices;
- Don’t forget the kids; and
- Talk with CMS about initiatives underway
and planned direction of agency.
In closing, Polly remarked and it resonated among
the group—ultimately, these questions need to be asked of
the consumers. The next board teleconference will take place in
January/February of 2004 and the primary focus of input from the
board will be framing the recommendations for the NCD report. A
number of board members commented on the complexity and challenge
of the project.
Appendix C.3.
NCD
National Consumer Advisory Board
Meeting Minutes
March 17, 2004
I. Introductions
Brief re-introductions were made by those members
present on the teleconference including Marilyn Rohn, Charlie Carr,
Polly Arango, Linda Horton St. Hubert, Kay Tucker, and Peter Thomas.
Also present were Carol Novak from the NCD, and the HDWG project
team of Carol Tobias, Debby Allen, Kate Brown, and Kate Tierney.
Owen McCusker, Patty Osborne Shafer, and Denise Payne were not able
to join the call.
The HDWG briefly reviewed the purpose and content
of the three draft documents sent in advance of the meeting and
encouraged the membership to actively comment on them.
II. Literature Review—Consumer-Directed Long-Term
Care
It was explained that the first draft document, Literature
Review—Consumer-Directed Long-Term Care, was a summary version
of a literature review section conducted by the HDWG—a synopsis
of the approach undertaken and resultant findings. The membership
was invited to comment on the document, particularly the findings.
The following comments and suggestions were made on the Literature
Review document:
- The paucity of research and the general
lack of interest is noteworthy.
- Researchers engage where funding is directed
and the lack of research in this area is reflective of the apathy
of funding agencies and the consumers not making it a more pressing
issue.
- The NCD could be most useful by drawing
attention to the lack of research in this area.
- Carol Novak introduced herself as an NCD
Board member and indicated that the NCD had been successful in
getting some research generated using census data. She encouraged
the group to propose areas of need and specific funding levels.
- The NCD was complimented for its efforts
in advancing the New Freedom Initiative grants as the best opportunity
to shift institutional biases.
- Policymakers should focus evaluation efforts
on quality of life measures and the need for a universal taxonomy
as opposed to the traditional cost-effectiveness emphasis.
- The more subjective the outcomes (e.g.,
quality of life), the larger a sample size is needed.
- It was noted that unpaid care makes community
living possible, and that not enough attention has been given
to it.
- It was suggested that program evaluations
look at caregiver quality of life and the cost factor of unpaid
care.
- Look to the National Association of Family
Caregivers for study of unpaid care.
- Long-term care insurance is a possible
model for study in the area of consumer-directed care.
- The findings of consumer-directed care
being as safe as or safer than traditional agency-directed care
were conclusive and should be highlighted since lack of safety
is one of the biggest arguments against consumer-directed care.
- Note the focus of studies on adult populations,
over the age of 65, and the lack of studies on children and youth
as a prominent finding.
- Evaluations that measured cost-effectiveness
had different findings, depending on the community studied. In
the DD community, where HCBS programs deinstitutionalize people
with disabilities, HCBS programs were generally cost-effective
because community care is cheaper than institutional care. In
other communities (e.g., elders, children with special health
care needs), where HCBS programs seek to prevent or delay institutionalization,
they are generally not cost-effective, because it is very difficult
to prove who would or would not be forced into institutionalization
lacking such programs. For these populations, programs are cost-effective
only if they target participants very selectively (e.g., require
applicants to be screened for nursing home admission).
III. Key Informant Cited Barriers to Consumer-Directed
Care
The following comments and suggestions were made
in reference to the second draft document, Key Informant Cited Barriers
to the Adoption of CD.
- Caution for citing the Medicaid bureaucracy
as a barrier; may play into the current climate of passing all
Medicaid risk onto states as a means of flexibility.
- Medicaid institutional bias is real; “money
should follow the person, not the facility” should be the
focus verses inflexibility. Frame the argument as more choice/flexibility
with community-based services. The spending data is persuasive.
- Although Independence Plus streamlines
the waiver process for states that access personal care under
1915(c) and 1115 waivers, it doesn’t help the generally
more progressive states that offer personal care services as a
state plan benefit.
- There is a false assumption that states
that cover PCS under the state plan have all-encompassing PCS.
Yet, people with psychiatric disabilities in Massachusetts cannot
get a personal care assistant to assist with cuing.
- The Independence Plus templates are too
broad and give too little direction to the states on how to provide
consumer-direction and what determines consumer direction. Direct
the research to assess the existing models and use the results
to inform the policy for states and adjust the template parameters
accordingly (setting individualized budgets, administering funds,
etc.).
- Factors of cost-neutrality; further complicated
by in-kind care estimates are volatile, debatable, and contentious.
Caution on emphasis in report.
- Lack of common definitions is important.
- Provider resistance is important. Educating
the providers is critical and should be conducted simultaneously
with other stakeholders.
- The lack of standards and responsibility
for licensing and training of caregivers are important barriers,
needing address.
- Consider a recommendation to “professionalize”
the caregivers as a response to the labor shortage issues. The
shortage needs to be publicized along with choice as an important
parameter. The nursing shortage is well known; the direct care
worker shortage is not known.
IV. DRAFT Recommendations to NCD
The following comments and suggestions were made
in reference to the DRAFT Recommendations document:
- To ensure the inclusion of consumers across
the span of disability, modify the word consumer by adding “with
a variety of disabilities” in the second paragraph of the
first recommendation.
- With respect to the programmatic recommendation
to establish a locus of responsibility within the federal government,
it was noted that a history already existed. The Coordinating
Council on Rehabilitation and Research (which collaborated with
AHRQ and NIDRR), housed within the Department of Education, was
established to focus on rehabilitation and disability research,
with an emphasis on physical disabilities. There was a report
in 1997 calling for this merger.
- It was clarified that the recommendation
was for a group more HRSA-like than NIDDR-like, that it is meant
to be programmatic, and would be a place to address concerns where
the market fails—the locus that currently resides at CMS
by default.
- The earlier suggestion to make the waiver
templates more directive (and informed by the research) should
be included under Research Recommendation #3.
- Emphasize the cross disability and cross
generational nature of initiatives as important—elders and
persons < the age of 65 are of the combined desire and demand
for community-based alternatives.
- Demographics—size, breath, depth,
should be included in recommendations to provide context.
Prior to adjourning the meeting, the HDWG commented
on the lack of research with mental health outcomes. Several members
referred to different pilot projects of wellness models replacing
medical models across the country as just beginning for which evaluation
will be forthcoming. Caution for adoption of the PACT model, describing
it as regressive was expressed.
The HDWG will be sending drafts of the report to
all the CAB members with the understanding that not everyone will
be able to read the long report and critique it before the HDWG
submits it to the NCD. All members were thanked for their participation
on the CAB.
Appendix D.1.
Outcomes
Literature Review Protocol
Name of Reviewer:
Date Reviewed:
Article Citation:
Type of Source
(Peer Review Journal, Government Report, Newsletter, Foundation
Report, Web site/Self-Published, In-house study (HDWG))
Funding Source for Analysis (different from
intervention?)
Affiliation of Authors:
Study Purpose
- Pilot/Feasibility
- Process Evaluation
- Outcome Evaluation
- Cost-Benefit Analysis
- Cost-Effectiveness Analysis
- Other:____________
Study Design
(RCT, Quasi-experimental, Cohort—retrospective, Cohort—prospective,
Cohort—ambi-directional, Case Control, Pre-experiment (before/after),
Cross-sectional, Case study, Ecological, Qualitative)
Study Duration
Geographic Location
Target Population Demographics
Describe Inclusion and Exclusion criteria related
to demographics. For example: race, age, gender, SES (proxies can
be income, insurance status, education), language
Disability Profile
- Diagnoses/conditions—(physical, psychiatric,
developmental, CSHCN, SED, chronic illness, sensory)
- Functional Limitations (IADL, ADL)
Sample Size and Unit
For example: individual, clinic, community
Observation unit
For example: individual, clinic, community
Sampling Methods—(Random—systematic,
Random—simple, Random—stratified, Random—Cluster,
Nonrandom—convenience, Nonrandom—purposive, Nonrandom—quota,
Census)
Intervention/Program
- Category of intervention (summary), e.g.,
Expanding eligibility, Outreach, Personal Assistance, Consumer-directed
long-term care; Creating a multidisciplinary care team, etc.
- Description of Intervention/Program (Location,
target population, duration, activities)
Intermediate Outcomes Studied
For example (Access to health care services, Access
to mental health and substance abuse treatment services, Access
to long-term support services and community living, Access to preventative
care/risk reduction services, Change in health behavior, Reduced
utilization of inpatient, emergency or institutional services)
Long-Term Outcomes Studied (health-related
QOL, Health Outcomes, Consumer Satisfaction, Age and culturally
appropriate consumer participation in decisions about life, Cost
Effectiveness)
Analysis Measure(s) of association (Strength
and Statistical Significance) if applicable
(For example, RR, OR, Chi-square, and p-value or
confidence interval)
- Type(s) of analysis (how analyzed)
Findings/Outcomes
Conclusions/Recommendations
Follow-up notes
Other notes
Appendix D.2.
Policy
Study Protocol
Name of Reviewer:
Date Reviewed:
Article Citation:
Type of Source:
Funding source for Study (different from intervention?):
Affiliation of Author:
Purpose of the Study:
Study Design:
Geographic Location(s):
Study Subjects (e.g., state officials, health
plans, ILCs):
Number of interviews/case studies:
Summary of Analytic Methods (including logic
for selection):
Disability Population Demographics:
Policy/Program:
Findings/Recommendations:
Follow-up notes:
Contact information:
Other notes (type in):
Appendix E.
Consumer-Oriented
Managed Care Outcomes
Managed Care Outcomes
Managed care has been a major trend in the financing
and delivery of health care over the past two decades, and disability
advocates have raised concerns about how this trend affects people
with disabilities. The managed care incentives to control or reduce
costs, and the traditional mechanisms to achieve cost savings, such
as restricted provider networks, utilization controls, and service
authorization requirements, could have an adverse impact on the
health of people with disabilities. At the same time, managed care
systems claim to emphasize care coordination and preventive care,
services that could benefit people with disabilities but are often
missing in fee-for-service health care systems.
Results in this area parallel those in relation to
other findings: studies are inconsistent and/or seem to reflect
complex interactions between consumer and program attributes and
contextual factors that are not fully elucidated in study reports.
There is no basis, therefore, for drawing general conclusions about
either the sorts of individuals who may be better cared for in managed
or fee-for-service systems, or the models of managed care that are
likely to work best for specific consumer groups. The specialty
program described in Appendix J do suggest that some managed care
models can work well for some consumers, but research does not yet
offer us a science for matching system attributes to client needs
to optimize outcomes.
The search of published and unpublished literature
revealed few studies that examined the impact of managed care on
people with disabilities. There were dozens of descriptive studies,
but few contained outcomes evidence. We identified 13 studies with
sample sizes over 75, covering eight significantly different topics,
that addressed the service or satisfaction outcomes among people
with disabilities enrolled in managed care plans.
These 13 studies included the following:
- Two studies that compared the experiences
of Medicare managed care enrollees with Medicare fee-for-service
enrollees;
- One study that compared the experiences
of older and younger Medicare managed care enrollees;
- Four studies that compared the experiences
of people dually eligible for Medicaid and Medicare who were enrolled
in managed care plans with those who received services in the
fee-for-service systems;
- One study that compared the experiences
of Medicaid managed care enrollees with disabilities before and
after their enrollment in managed care;
- One study that compared the satisfaction
of Medicaid managed care enrollees with disabilities with Medicaid
managed care enrollees who received benefits based on Transitional
Assistance for Needy Families status;
- One study that looked at the difference
in the experience of Medicaid managed care enrollees based on
the characteristics of the managed care plan model;
- Two studies that compared the experiences
of employed individuals with chronic illnesses who were enrolled
in managed care plans with the experience of similar individuals
who received care in indemnity plans; and
- One study that compared the experiences
of dually eligible managed care enrollees who were enrolled in
two different models of managed care.
Below we provide an overview chart of the 13 studies
and eight different topic areas considered in this review. It is
important to note that four of these studies, conducted of three
different programs, were studies of specialty managed care programs
designed to serve people who were dually eligible for Medicaid and
Medicare. These programs all operated under risk-adjusted payment
systems for relatively limited populations.
The diversity of these studies makes it difficult
to draw any general conclusions about the impact of managed care
on people with disabilities. The research conducted was among different
study populations (Medicare, Medicaid, dually eligible, and privately
insured) and different managed care program models, and different
outcomes were measured. Below, we provide an overview of the 13
studies, sample sizes, populations studied, and basic research methods.
The main outcomes examined in these studies were satisfaction
with care (11 studies) and access to care (7 studies). Three studies
also examined change in health status and service utilization; and
one study looked at consumer participation and costs. The table
below provides an overview of the outcomes measured in each of the
studies.
Managed Care Outcomes Summary
Satisfaction
Eleven of the studies examined satisfaction with
care among people with disabilities enrolled in managed care plans,
usually in comparison with populations that were not enrolled in
managed care, or with another population enrolled in managed care.
Gold et al., 1997, conducted a study of Medicare
managed care enrollees and disenrollees, oversampling enrollees
under the age of 65 and over the age of 85, African Americans, and
disenrollees. Samples were then weighted to ensure that estimates
were representative of the national population. The study compared
the experiences of people over and under the age of 65 within Medicare
managed care. Gold found that managed care enrollees generally rated
their health status higher than those in the fee-for-service program.
People under the age of 65 were more likely to disenroll than older
people, and were also more likely to report poor or fair health.
Eighty-nine percent of enrollees with disabilities said they would
recommend their health plan to family or friends.
Iezzoni et al., 2002, looked at a nationally representative
sample of community-dwelling Medicare beneficiaries, primarily to
examine health care access for older and younger Medicare beneficiaries
with disabilities. The authors found that people with disabilities
were less satisfied with care than other Medicare beneficiaries,
but this varied by the type of care needed and the age of the enrollee,
and was not related to managed care enrollment. Iezzoni et al. also
examined satisfaction with care for Medicare beneficiaries enrolled
in managed care organizations compared with people who received
Medicare fee-for-service benefits. They found that managed care
enrollment made no significant difference in satisfaction with care.
Older members were slightly more dissatisfied with access to specialists
under managed care, but both older and younger beneficiaries with
disabilities were significantly more satisfied with the costs of
their managed care services.
Hill and Wooldridge, 2002, conducted a study of Medicaid
SSI managed care enrollees in four different health plans in Tennessee.
Study participants were under the age of 65, lived in the community,
and received neither Medicare benefits nor Home- and Community-Based
Waiver Services. Approximately 80 percent of the sample was African
American. The study looked at managed care organization, age, and
type of disability using regression analysis to compare access to
and quality of care, controlling for enrollee characteristics. The
plan ranked most highly by Medicaid members in the areas of provider
knowledge of disability, how disability affected day-to-day life,
and the information the members received about managing their condition
was the plan with the largest provider network. The plan that was
based among university-affiliated physicians and safety net providers
was not ranked as high.
The next three studies included in this report were
self-published or foundation-published studies. The Minot et al.,
1996, study was a member satisfaction survey conducted in Spanish
and English of 143 SSI Medicaid managed care enrollees in New Jersey.
Enrollment in this managed care program was voluntary. Slightly
over half the sample was African American. Sixty percent of the
respondents rated their health as fair or poor. Managed care enrollees
preferred the managed care plans to fee-for-service in their choice
of doctors, the ability to get advice by telephone, and the ability
to get specialty care. People preferred fee-for-service to managed
care in the convenience of office hours, waiting times for appointments
and in the doctor’s office, and the ability to get dental
care. Respondents whose health status was good or excellent were
more likely to prefer managed care than respondents whose health
status was fair or poor.
ORC Macro, 2002, conducted a patient satisfaction
survey of Medicaid aged, blind, and disabled (ABD) members enrolled
in Caloptima, a county-operated health system in Orange County,
California, that contracts with 11 health networks to provide capitated
acute medical care. The random sample of 2,742 members received
surveys in English, Spanish, and Vietnamese. The satisfaction survey
included many of the questions contained in the widely used Consumer
Assessment of Health Plan Satisfaction (CAHPS) survey in order to
allow comparison between Caloptima’s members with disabilities
and their previously surveyed Temporary Assistance to Needy Families
(TANF) members. TANF members were more likely to rate their health
as excellent (63 percent) than ABD members (7 percent). TANF families
were significantly more likely than ABD members to report that their
doctors explained things well and showed respect for what they had
to say. TANF families also reported fewer problems getting specialty
referrals, or getting care right away for an injury or illness.
Schaller Anderson, Inc., 2002, conducted a satisfaction
and cost study of Medicaid managed care enrollees in Oklahoma who
had been identified by the state as being among the 10 percent highest
cost SSI members. The satisfaction survey was conducted among 194
managed care enrollees with disabilities. Eighty percent of these
individuals reported that their managed care experience was good
or very good, and 83 percent reported that they received the care
they needed all the time or most of the time. Managed care enrollees
also reported greater satisfaction with the ease of obtaining prescriptions,
health care services received in general, and the ease of seeing
a doctor after enrollment in managed care as compared with prior
experiences in the fee-for-service system; however, authors did
not report if this difference was significant. It should also be
noted that this was a foundation-published report, and the report
authors were involved in the management of the managed care plan
assessed in the study.
Druss et al., 2000, conducted a study of employees
of three major corporations who were enrolled in three types of
health insurance plans: fee-for-service plans, independent practice
associations (IPAs), and prepaid group practices. The purpose of
the study was to examine if people with chronic illnesses were more
satisfied with their health care services under one type of plan
than the others. In general, the managed care enrollees (members
of IPAs or prepaid group practices) were younger, higher functioning,
and less likely to have a medical illness or chronic illness than
fee-for-service enrollees. However, individuals with chronic illnesses
in both groups reported the same level of dissatisfaction with their
services. The overall conclusion drawn by this study was that chronic
illness predicted many aspects of dissatisfaction with managed care,
but did not predict dissatisfaction with fee-for-service care.
The next five studies reported satisfaction outcomes
for dually eligible Medicaid/Medicare managed care enrollees in
specialty managed care plans. The Burton et al., 2001, study compared
the experience of 200 enrollees in Elder Health, a for-profit managed
care plan in Baltimore for dually eligible elders, with 201 local
fee-for-service dual eligibles and a national sample of 531 fee-for-service
dual eligibles. Elder Health provided transportation to all medical
visits and a team approach to care by nurse practitioners and physicians.
Differences in the three samples included race (Elder Health serviced
primarily an African-American population), age, and self-reported
health status. Self-reported health status of the two Baltimore
cohorts was lower than the national sample, and the national sample
was older and had more ADL needs. Dual-eligible members enrolled
in Elder Health were significantly more satisfied with care in general
than both fee-for-service cohorts, especially in access to care
and the technical skills of their providers. However, they were
significantly less satisfied with the interpersonal manners of their
providers.
Kane et al., 2001, and Kane et al., 2003, conducted
two studies of the Minnesota Senior Health Options Program (MSHO),
a managed care plan for people over the age of 64 who were dually
eligible for Medicaid and Medicare. The MSHO benefit package included
most Medicaid services, including a portion of nursing home care,
and the program was operated by three managed care organizations.
Capitation payments could be used to cover services that were outside
the traditional benefit package, and providers were required to
offer care coordination. The majority of MSHO members lived in nursing
homes. In both studies, the authors compared MSHO members with two
comparison groups: dual-eligible elders in the same community who
did not enroll in MSHO, and dual eligibles living in other counties
where MSHO was not available, who thus could not enroll in the program.
All three groups were stratified according to the location of residence
(community or nursing home). Interviews were administered in only
English, although proxy responses were allowed.
Kane et al., 2001, found that MSHO and comparison
groups were similar in demographics, illness patterns, and function.
There were no significant differences in satisfaction among the
three community samples, but MSHO nursing home residents and families
expressed more satisfaction with several aspects of care. In summary,
Kane et al. concluded that the minor differences in satisfaction
that did exist among samples were probably attributable to geographic
differences and the availability of resources in different communities.
Kane et al., 2003, used the same model for the research
but was able to look at changes over time. Again, there were few
differences in satisfaction among the three samples, but MSHO clients
were more satisfied with their involvement in decisionmaking about
medical care, and MSHO families reported significantly lower burden
in five areas than controls. Thus, Kane et al. concluded that although
MSHO did not seem to differ significantly in terms of members’
experiences, families of members experienced relief under the program.
Kane et al., 2002, conducted a study of the Wisconsin
Partnership Program, a program for dual eligible adults and elders
in Wisconsin. The Partnership program was similar to the Program
of All Inclusive Care for the Elderly (PACE—see below) except
that it allowed people to keep their own physicians and did not
require them to participate in adult day care. Health care services
were provided by an interdisciplinary team that included a nurse,
social worker, and nurse practitioner. Kane et al. examined differences
in the experiences of elder Partnership enrollees with PACE enrollees
living in the community to explore whether people were more satisfied
with either of the two models. In-person interviews were conducted
and proxies were permitted. The PACE sample was older, less likely
to be married, and included more racial/ethnic minorities. PACE
enrollees were more likely to have dementia but less likely to have
heart disease or chronic pulmonary disease. The authors found no
significant difference in satisfaction after adjusting for age,
race, education, function, and number of medical conditions.
The Chatterji et al., 1998, study compared the experiences
of people enrolled in PACE with the experiences of people who inquired
about the program but did not enroll. PACE was a Medicaid/Medicare
managed care option for Medicaid recipients over the age of 55 who
were eligible for nursing home admission. The PACE model included
comprehensive medical and social services through an interdisciplinary
team of providers who operated out of an adult day center. The center
served as a social venue for PACE enrollees as well as the main
location for medical and social service care. The Chatterji et al.,
1998, study was conducted over a two-year period, with interviews
administered every six months. PACE enrollees were more likely than
comparison group members to be female and widowed, and were less
educated and less cognitively impaired. There were no differences
between the two groups in terms of race or ethnicity. PACE enrollees
reported better health status. In regression analysis, the authors
found that PACE enrollees were significantly more likely than comparison
group members to be very satisfied with their care arrangements,
had more confidence in dealing with life’s problems, were
more likely to report having at least some choice in how they spent
their time, and had a higher probability of finding life to be satisfying.
To summarize the results of all of these studies:
- Health status of managed care enrollees
compared with fee-for-service enrollees was higher in three of
the studies (Gold et al., 1997; Druss et al., 2000; Chatterji
et al., 1998) and lower in one (Burton et al., 2001).
- Three of the studies found no significant
difference in satisfaction between fee-for-service and managed
care enrollees (Iezzoni et al., 2002; Kane et al., 2001; Kane
et al., 2003).
- Two of the studies found more satisfaction
in some areas and less in others (Minot et al., 1996; Druss et
al., 2000).
- Four of the studies found increased satisfaction
with managed care overall compared with fee-for-service (Druss
et al., 2000; Burton et al., 2001; Schaller Anderson, Inc., 2002;
Chatterji et al., 1998).
Access
Seven of the studies, including six of those mentioned
above, examined access to care for individuals with disabilities
or chronic illness who were enrolled in managed care. The seventh
study, Stafford et al., 2003, examined the health care experiences
of adults with diabetes, congestive heart failure, and asthma to
determine whether people who received managed care services through
three health plans were more or less likely to use chronic disease
medications than people who received care through two fee-for-service
plans. Although the majority of individuals in this study were privately
insured, each category of plan offered at least one Medicare product.
Using multiple logistic regression to adjust for case mix and the
number of primary care visits, the authors found that managed care
enrollees were more likely to use chronic disease medications than
fee-for-service enrollees in most cases. This held true for both
expensive and inexpensive medications. It should be noted, however,
that while the fee-for-service patients faced high deductibles and
coinsurance for prescription drugs, the managed care enrollees had
no deductibles and only modest co-payments for prescription drugs.
This suggests that the differences in utilization might be associated
with the cost of medications under each service delivery model.
Iezzoni et al., 2002, found that older Medicare health
maintenance organization (HMO) beneficiaries were significantly
less satisfied with access to specialists than Medicare fee-for-service
beneficiaries. HMO beneficiaries also were less satisfied with the
availability of medical care at night and on weekends, but the difference
was not statistically significant. Gold et al., 1997, also looked
at access to care for Medicare HMO enrollees, and found that younger
Medicare enrollees with disabilities experienced more access barriers
with adverse consequences than elderly HMO enrollees. Statistically
significant barriers included difficulty making appointments, delays
while waiting for plan approval of services, inadequate home health
care, and lack of referral to a specialist or admission to a hospital
when the enrollee thought it was needed. Gold et al. also found
that younger fee-for-service enrollees with disabilities, like their
HMO counterparts, were more likely to experience barriers to access
than elderly fee-for-service enrollees—this access gap was
actually greater under fee-for-service systems than it was under
managed care. In their one comparison between HMO and fee-for-service
enrollees, Gold et al. found that HMO enrollees with disabilities
were more likely than fee-for-service enrollees with disabilities
to experience access problems, although HMOs did better than fee-for-service
systems in providing preventive care.
Hill and Wooldridge, 2002, found that nearly all
of the Medicaid managed care enrollees with disabilities in Tennessee
felt they had good access to providers, a usual source of care,
and the ability to schedule appointments within one week of contacting
their providers, regardless of the specific health plan model. Enrollees
in the fee-for-service health plan, however, reported greater access
to preventive care and more visits to manage their chronic conditions
than enrollees under the three capitated health plans. They also
reported better access to services, fewer delays in receiving approval
for care, and better access to emergency services.
In comparing the Medicaid managed care experiences
of the ABD population with the TANF population, ORC Macro, 2002,
found that ABD members were less likely than TANF members to get
a referral to a specialist or to get care right away for an illness
or injury, and were more likely to experience delays in health care
while waiting for approvals from their health network.
Burton et al., 2001, compared the experience of dual
eligibles in a managed care specialty program with the experience
of enrollees in fee-for-service programs. The authors found that
dually eligible enrollees in managed care were significantly more
likely to report that they were “highly satisfied” with
access to care than those in fee-for-service. Managed care enrollees
also had better access to preventive care than those in both the
local and national fee-for-service programs.
To summarize the results of these studies:
- Working-age adults with disabilities routinely
reported more access barriers than elders or TANF beneficiaries,
regardless of whether they were enrolled in an HMO or in a fee-for-service
program (Gold et al., 1997; ORC Macro, 2002).
- Some HMO enrollees experienced more access
problems (especially access to specialists) than fee-for-service
enrollees (Iezzoni et al., 2002; Gold et al., 1997).
- There was some evidence that HMOs provided
better access to preventive care and prescription drugs (Gold
et al., 1997; Burton et al., 2001; Stafford et al., 2003).
- The one study of a managed care specialty
program for dually eligible participants demonstrated better access
on all fronts than comparable fee-for-service programs (Burton
et al., 2001).
Changes in Health or Functional Status
Three studies examined changes in health status under
managed care, the first looking at general managed care, and the
other two looking at specialty managed care programs. Schaller Anderson,
Inc., 2002, found that health status improved among the Medicaid
ABD population from the time of enrollment in managed care to a
follow-up period after enrollment. Kane et al., 2003, found no significant
differences in function over time for dually eligible enrollees
in MSHO or for two fee-for-service comparison groups.
Chatterji et al., 1998, found that PACE enrollees
reported better health status and quality of life over time than
a fee-for-service comparison group. This effect was most dramatic
six months after the baseline survey. In some areas, PACE enrollees
also experienced less deterioration in physical function than the
comparison group during the first six months of enrollment. Holding
other factors constant, participation in PACE was associated with
a lower mortality rate and an increased number of days living in
the community than the comparison group. Chatterji et al., 1998,
also found that the percentage of PACE enrollees reporting good
or excellent health was very stable over time, while the percentage
of comparison group members originally fluctuated, and ultimately
dipped in the second year.
In summary, two studies (Chatterji et al., 1998;
Schaller Anderson, Inc., 2002) found that managed care enrollees
experienced positive changes in health status over time or less
deterioration than a fee-for-service comparison group, while the
third study found no significant differences in functional status
change between managed care enrollees and comparison groups (Kane
et al., 2003).
Changes in Utilization
Three studies of two specialty programs for dually
eligible enrollees examined changes in service utilization over
time. Kane et al., 2001, found that MSHO enrollees were more likely
to use special transportation than both sets of controls and were
more likely to have had a nurse visit than one set of controls.
Two years later, Kane et al., 2003, found a significant increase
in MSHO enrollees’ use of homemaker services, meals on wheels,
and outpatient rehabilitation over the use of these services by
the comparison groups. MSHO enrollees also received significantly
less help from family with household tasks than one of the control
groups. Chatterji et al., 1998, found that PACE enrollees had much
lower rates of nursing home utilization and
in-patient hospitalization than did comparison group
members. PACE enrollees showed higher utilization of ambulatory
services. These differences between PACE enrollees and comparison
group members were still evident two years after enrollment in PACE,
although the magnitude of the difference did appear to diminish
over time.
Consumer Participation
Although only one of the studies examined consumer
participation as an outcome, it is worth mentioning here because
it links studies of managed care to studies of consumer-directed
and
-oriented long-term care, which place consumer participation
squarely in focus. Kane et al., 2003, looked at enrollees’
self-rated involvement in making decisions about medical care, finding
that MSHO enrollees were more likely to be involved with decisionmaking
than non-enrollees. Family satisfaction in this respect with input
into decisionmaking was also greater among MSHO families than among
fee-for-service comparison group families, although the difference
was not significant.
Cost
Only one study, Schaller Anderson, Inc., 2002, looked
directly at the claims data to examine cost as an outcome. Per member
per month costs dropped 4 percent for Medicaid SSI beneficiaries
as a result of switching from fee-for-service to managed care. This
figure took into account the additional administrative cost under
managed care.
Conclusion
The research described here is far too diverse in
terms of program models, study populations, study questions, and
findings to generate conclusive findings. A few trends are worth
noting, however. In general, younger people with disabilities seemed
to experience more barriers to care than older people who receive
Medicare benefits, regardless of enrollment in managed versus fee-for-service
care. Medicare beneficiaries enrolled in managed care had better
access to preventive care and prescription drugs, but experienced
more difficulty gaining access to specialists and other components
of care. On the other hand, at least two of the studies of specialized
managed care programs for people dually eligible for Medicare and
Medicaid found that people in the managed care programs had better
access to a wide spectrum of outpatient care.
Several studies documented that managed care enrollees
had better health status than fee-for-service counterparts; one
study, however, found the reverse to be true. Satisfaction outcomes
varied greatly across the studies, and these results are confounded
by the fact that some studies compared managed care enrollees with
fee-for-service enrollees, while others compared the satisfaction
of younger and older Medicare beneficiaries, or TANF and SSI members
in one or the other financing system. In fact, differences in satisfaction
may be linked to program model, health status, or other factors
that were not fully explored. In addition, it is important to note
that most of the managed care programs studied were voluntary enrollment
programs, and thus people’s health status may have been a
factor in their choice of program model.
It is clear that there is a need for further research
that goes beyond one program in one state, or limited questions
posed of national samples, in order to understand if outcomes really
differ for people with disabilities who enroll in managed care plans.
In addition, research is needed to clarify how differences in outcomes
may be associated with specific program models. The studies discussed
here provide a baseline and a framework for considering the implementation
of broader research initiatives. Findings from these studies confirm
some speculations (healthier people tend to enroll in managed care
programs), while they defy others (in a voluntary plan or specialty
plan, people with disabilities may be more satisfied with their
managed care plans than they were with their fee-for-service programs).
Appendix F.
Key
Informant List
Appendix G.1.
Consumer-Directed
and Consumer-Oriented Health Care for People with Disabilities
Key Informant Interview Guide—Long-Term
Care
The Health and Disability Working Group at the Boston
University School of Public Health has sent this interview guide
to you as part of a project for the National Council on Disability
(NCD) to assess the state-of-the-art in relation to consumer-directed
and consumer-oriented services.
We are contacting you about reforms related to the
implementation of long-term care for people with disabilities, which
we have identified as one of the topics on which there are outcome
studies. Our focus within the broad topic of long-term care is to
look at innovative and responsive models aimed at enhancing care
for individuals with disabilities—spanning the spectrum of
children to elders and all types of disability.
1. The findings of our literature review in relation
to long-term care services and supports for people with disabilities
are contradictory, ambiguous, and subject to more than one interpretation
within individual studies. For instance,
- In some studies, interest in consumer-directed
models like Cash and Counseling varied by age, disability level
of functioning, and race/ethnicity. In other studies, there
was no difference.
- In some studies, consumer direction resulted
in fewer unmet needs; in other studies, there was no change.
- Consumer direction could be cost-effective,
but in many studies, cost-neutrality was not achieved.
- Also, there were mixed results on health
status and access measures.
a. First, we would like to explore your perception
of the rationale(s) for implementing long-term care options for
people with disabilities. What are your views about home- and
community-based alternatives to institutional care as a means
to improve outcomes?
b. Consumer involvement in the planning, design,
implementation, or evaluation of long-term care systems is not
well reported in the literature. What is your sense of the extent
of consumer involvement?
c. In terms of research findings, our review suggests
that consumers with disabilities are generally satisfied with
community-based supports, whether or not they are consumer-directed.
We have noted some apparent advantages to consumer-directed care
for those who choose consumer direction. In general, research
findings indicate that younger persons with disabilities and those
with relatives providing care are particularly favorable to the
consumer-directed models. Do these findings resonate with you?
Are there other relevant evidence-based outcomes
known to you?
d. What factors do you associate with these outcomes?
e. Do you know of research that suggests that these
findings are particularly applicable, or inapplicable in relation
to particular disability categories, or to the age, sex, or race/ethnicity
of consumers or to particular geographic regions?
f. Do you find those data persuasive?
- Are there particular findings or experiences
in related fields that you feel confirm or challenge these studies?
- Are there methodological or measurement issues
we should be aware of in assessing the validity of these findings?
g. Do you think there are important gaps in practice
and/or research that have not been and are still not being addressed,
in terms of understanding how reforms in this area affect particular
populations?
h. What do you see as the major barriers to research
and/or to replication of practices shown to be effective in this
area?
i. If you could fund one research project concerning
long-term care for people with disabilities, what is the topic
you would look at?
2. Are you aware of any long-term care programs
specifically designed to serve persons with disabilities?
3. Finally, we want to put our findings on long-term
care for people with disabilities in context with other consumer-directed
and -oriented programs we’ve reviewed. We have identified
reforms related to implementation of managed care and reforms
related to community-based long-term care as the two areas in
which research findings on outcomes are available. Beyond that,
we have identified three areas that are promising in relation
to consumer-oriented care, but for which outcome studies are limited
at best. These are mental health parity, medical home for children
with special health care needs, and the Ticket-to-Work and Work
Incentives Act.
a. Does this characterization of the emerging practices
seem accurate to you?
b. Is there another important topic we are leaving
out?
c. Have we failed to recognize documentation in
any of our emergent areas that should be moved up on our documentation
scale?
THANK YOU VERY MUCH FOR YOUR TIME
AND PERSPECTIVES!
Appendix G.2.
Consumer-Directed
and Consumer-Oriented Health Care for People with Disabilities
Key Informant Interview Guide—Managed
Care
The Health and Disability Working Group at the Boston
University School of Public Health has sent this interview guide
to you as part of a project for the National Council on Disability
(NCD) to assess the state-of-the-art in relation to consumer-directed
and consumer-oriented services.
We are contacting you about reforms related to the
implementation of managed care for people with disabilities, which
we have identified as one of the topics on which there are outcome
studies. Our focus within the broad topic of managed care is to
look at innovative and responsive models aimed at enhancing care
for individuals with disabilities—spanning the spectrum of
children to elders and all types of disability.
1. The findings of our literature review in relation
to managed care for people with disabilities are contradictory,
ambiguous, and subject to more than one interpretation within
individual studies. For instance,
- In some studies, managed care enrollees
had better access to specialists and medications, and in other
studies, fee-for-service enrollees had better access to care.
- Satisfaction was likewise, mixed.
a. First, we would like to explore your perception
of the rationale(s) for implementing managed care for people with
disabilities. What are your views about managed care as a means
to improve outcomes?
b. Consumer involvement in the planning, design,
implementation, or evaluation of managed care systems is not well
reported in the literature. What is your sense of the extent of
consumer involvement?
c. In terms of research findings, our review suggests
that consumers with disabilities are no less satisfied in managed
care than in fee-for-service systems. We did, however, find that
younger people and people with mental health conditions were less
satisfied than elder persons with disabilities. We also found
evidence of dissatisfaction with the level of home care available
to younger consumers with disabilities. Finally, we found that
overall satisfaction with a given system was closely associated
with the level of choice available to consumers. Do these findings
resonate with you?
Are there other relevant evidence-based outcomes
known to you?
d. What factors do you associate with these outcomes?
e. Do you know of research that suggests that these
findings are particularly applicable, or inapplicable in relation
to particular disability categories, or to the age, sex, or race/ethnicity
of consumers or to particular geographic regions?
f. Do you find those data persuasive?
- Are there particular findings or experiences
in related fields that you feel confirm or challenge these studies?
- Are there methodological or measurement
issues we should be aware of in assessing the validity of these
findings?
g. Do you think there are important gaps in practice
and/or research that have not been and are still not being addressed
in terms of understanding how reforms in this area affect particular
populations?
h. What do you see as the major barriers to research
and/or to replication of practices shown to be effective in this
area?
i. If you could fund one research project concerning
managed care for people with disabilities, what is the topic you
would look at?
2. Are you aware of any managed care programs specifically
designed to serve persons with disabilities?
3. Finally, we want to put our findings on managed
care for people with disabilities in context with other consumer-oriented
programs we’ve reviewed. We have identified reforms related
to the implementation of managed care and reforms related to community-based
long-term care as the two areas in which research findings on
outcomes are available. Beyond that, we have identified three
areas that are promising in relation to consumer-oriented care,
but for which outcome studies are limited at best. These are mental
health parity, medical home for children with special health care
needs, and the Ticket-to-Work and Work Incentives Act.
a. Does this characterization of the emerging practices
seem accurate to you?
b. Is there another important topic we are leaving
out?
c. Have we failed to recognize documentation in
any of our emergent areas that should be moved up on our documentation
scale?
THANK YOU VERY MUCH FOR YOUR TIME AND PERSPECTIVES!
Appendix H.
Federal
Legislation Intended to Serve Persons with Disabilities
Appendix I.
Overview
of Laws and Legislative Initiatives
Americans, including those with disabilities, hold
equality and independence as core national values. These values
are reflected in the laws, policies, regulations, and programs enacted
by the executive, judicial, and legislative branches of government.
Below is a brief summary of the laws and policies that provide the
underpinning for consumer oriented practices reviewed in this study.
Legislative and regulatory reforms are categorized based on whether
they address
A. Equality of opportunity;
B. Acute medical care;
C. Community-based long-term care; or
D. Employment and economic independence.
A. Equality of Opportunity
The Rehabilitation Act of 1973
The Rehabilitation Act (Public Law 93-112) was a
major piece of legislation designed to protect the rights of people
with disabilities. Section 504 of the Rehabilitation Act states
that “No otherwise qualified individual with a disability
in the United States, as defined in section 706(8) of this title,
shall, solely by reason of his or her disability, be excluded from
participation in, be denied benefits of, or be subjected to discrimination
under any program or activity receiving federal financial assistance”
(EEOC Web site, 2003).
The Rehabilitation Act of 1973 was amended in 1992
to charge the National Institute on Disability and Rehabilitation
Research (NIDRR) with the responsibility to provide a comprehensive
and coordinated program of research and related activities to maximize
the full inclusion and social integration, employment and independent
living of individuals of all ages with disabilities. The Interagency
Committee on Disability Research at the Office of Special Education
and Rehabilitative Services was created to foster coordination across
federal agencies engaged in disability and rehabilitative research
programs (National Rehab Web site, 2004; ICDR Web site, 2004).
Americans with Disabilities
Act
The Americans with Disabilities Act (ADA), signed
into law in July 1990, was designed to fully integrate people with
disabilities into the mainstream of American life, to provide equal
opportunity for individuals with disabilities commensurate with
the prohibition of discrimination on the basis of age, race, religion,
or natural origin, for
- Individuals with a current disability;
- Individuals with a history of disability;
- Individuals who may be regarded as having
a disability by others, whether or not they actually have a disability;
and
- Individuals who encounter discrimination
on the basis of their association or relationship with an individual
with a disability (e.g., parents).
The Title II provision of the ADA, which concerns
the obligation of state and local government agencies to provide
equal access for individuals with disabilities, was challenged in
the United States Supreme Court’s historic Olmstead v. L.
C. decision (1999). Language in the ADA requiring that people receive
the “most integrated” services, in contrast with language
calling for the “least restrictive environment,” which
characterized the Rehabilitation Act, was the central issue in this
decision (ADA Web site, 2003).
Supreme Court Olmstead Decision
(Olmstead v. L.C. 527 U.S. 581 [1999])
In June 1999, the Supreme Court interpreted Title
II of the ADA as an obligation for all public entities to provide
services to people with disabilities in the most integrated setting
appropriate for their circumstances. Under Olmstead, public entities
are responsible for making reasonable modifications to achieve that
end. An agency seeking to comply with the ruling must
- Develop and implement comprehensive plans
to provide services for people in less restrictive settings; and
- Ensure that waiting lists for services in
community-based settings move at a reasonable pace (CMS Web site,
2003).
The Court ruled that it is a violation of Title II
of the ADA to institutionalize an individual when health professionals
have determined that community-based services would be appropriate
and when the individual desires such services. In response to the
decision, the Bush Administration announced the New Freedom Initiative.
New Freedom Initiative
The New Freedom Initiative is a broad federal interagency
initiative to assist states and localities with the implementation
of the Olmstead ruling. The New Freedom Initiative establishes and
funds activities that respond to the Olmstead decision. DHHS is
responsible for leading this effort, but all federal agencies are
mandated to identify barriers and solutions to support community
living for Americans living with disabilities. Last year, the President
created the New Freedom Commission on Mental Health, charging it
to conduct a comprehensive study of the nation’s mental health
delivery system (public and private) and make recommendations to
improve the system.
Mental Health Parity Act of
1996
The Mental Health Parity Act of 1996, an extension
of the Health Insurance Portability and Accountability Act (HIPPA),
amended the Employee Retirement Income Security Act (ERISA) and
the Public Health Service Act to require health insurance plans
with any mental health coverage to provide the same lifetime and
annual maximum dollar limits for mental health benefits as they
do for medical benefits. Thus, if plans do not impose dollar limits
on medical or surgical services, they may not place them on mental
health services. Plans without mental health coverage are not subject
to this law.
This legislation applies to groups of 50 or more
employees and to individuals covered by self-insured ERISA plans,
as well as fully indemnified plans and plans that operate under
the Federal Employee Health Benefits Act (FEHBA). Parity does not
apply to individual policies, Medicare risk contracts, Medicare
Select, or subsidized versions of Medicaid. Employers who can demonstrate
that provisions of the Act would result in a 1 percent or greater
increase in the cost of their group health plan can claim exemption
from the Act.
The national parity requirements went into effect
in January 1998, although states have enacted their own mental health
and substance abuse parity provisions since 1991, and many states
have passed parity laws more far-reaching than the federal mandate
(FMHI Web site, 2003; DOL Web site, 2003).
B. Acute Medical Care
Title XIX of the Social Security
Act—Medicaid
Title XIX of the Social Security Act established
the Medicaid program in 1965. Medicaid is the primary source of
federal funding for acute and long-term care for low-income individuals
with disabilities. Eligibility for Medicaid benefits is based on
both categorical and financial criteria. As an overall rule, people
with disabilities must meet the Social Security criteria for disability
or be determined medically needy, and must meet the income and asset
requirements for SSI. However, there is great variability in implementation
from state to state, with some states being far more restrictive
within the framework of federal guidelines, while others are more
lenient.
Two particularly important categories of Medicaid
coverage for people with disabilities are the Medically Needy and
Medicaid Buy-In programs. Medically Needy programs are discretionary
on the part of states: states have the option to offer Medicaid
eligibility to individuals with high medical costs who are otherwise
ineligible because they have income or assets above the financial
eligibility criteria. These individuals are allowed to “spend
down” this excess income and then obtain Medicaid coverage
for their health care expenditures. Medicaid Buy-In programs are
also discretionary on the part of states, and allow individuals
with high health care expenditures to pay a fee to “buy in”
to Medicaid as primary or supplemental insurance.
Title XIX of the Social Security Act stipulates that
in order for states to receive federal Medicaid funds, certain mandated
services must be provided to Medicaid recipients. Currently, there
are nearly 30 mandated Medicaid services, including hospital inpatient,
outpatient and emergency services, physician services, rural and
federally qualified health center services, laboratory and x?ray
services, home health care, nursing home care, and Early and Periodic
Screening, Diagnosis, and Treatment (EPSDT) services for all children.
States may also provide optional services, such as rehabilitative
and physical therapies, prescription drugs, transportation, dental
care, and vision services. In addition, states may provide Home-
and Community-Based Care Waiver Services, including case management,
personal care services, respite care services, adult day health
services, homemaker/home health aide, habilitation and other services,
further described under Community-Based Long-Term Care.
Managed Care—1915(b)
Waiver (Freedom of Choice) Program
1915(b) Waivers allow the Secretary of Health and
Human Services the authority to waive “statewideness,”
comparability of services among beneficiaries, and freedom of choice
requirements for Medicaid beneficiaries. The most common use of
1915(b) Waivers is to mandate enrollment of Medicaid beneficiaries
into managed care. States also use 1915(b) Waivers to allow for
the management of behavioral health services separately from medical
health services. A few states have used 1915(b) Waivers to provide
long-term mental health services to persons with severe and persistent
mental illness. States are responsible for ensuring that Waiver
Programs do not negatively affect access or quality of services,
and that they are cost neutral. 1915(b) Waivers require states to
conduct an independent assessment of the program.
Balanced Budget Act of 1997
The Balanced Budget Act (BBA) of 1997 included several
provisions relevant to people with disabilities. First, the BBA
gave states the option to implement mandatory Medicaid managed care
programs without a Waiver from the federal government. This option
applies to adults with disabilities, but exempts children with special
health care needs—thus, mandatory managed care programs for
children with special health care needs still require a Waiver application
and approval from the federal government. The BBA managed care provision
required states to develop and implement quality assessment and
improvement strategies and external independent reviews of managed
care organizations with which the state contracted for coverage
of Medicaid enrollees.
Second, the BBA created the State Children’s
Health Insurance Program (SCHIP) to expand coverage to uninsured
children, including children with disabilities. Third, the BBA gave
states the option to establish Program of All-Inclusive Care for
the Elderly (PACE) programs to provide community-based care and
integrate Medicare and Medicaid funds for beneficiaries over the
age of 55 with disabilities sufficiently serious to meet nursing
home eligibility standards.
Fourth, the BBA permitted states to offer “habilitation
services” in either residential or day settings, without the
previous requirement that the recipient be institutionalized. Residential
habilitation combines therapies, personal care, and clinical assistance
into a single service, usually serving persons with mental retardation
or other developmental disabilities residing in group homes or like
arrangements. Day habilitation services are generally provided outside
of the individual’s living place and may include transportation,
adult day health, mental health services, extended education, or
prevocational or supported employment services.
Title XVIII of the Social Security
Act—Medicare
The Medicare program was established along with Medicaid
in 1965 as Title XVIII of the Social Security Act. Medicare provides
health insurance for people over the age of 64. In 1972, amendments
to the Social Security Act expanded coverage to adults of all ages
whose disabilities prevented them from earning income.
While the Medicare program covers acute medical care,
it is not as comprehensive in coverage as the Medicaid program.
For example, Medicare does not pay for prescription drugs, personal
care assistance, extended nursing home care, and Intermediate Care
Facilities for the Mentally Retarded (ICFs/MR). Durable medical
equipment (DME) is covered only when prescribed by a physician for
use in the home, and respite is covered only as part of hospice
care. Inpatient care, outpatient care, and partial hospitalization
for mental health care is covered only when furnished by a doctor
or health care professional who is a Medicare provider. Substance
abuse treatment is covered only as an outpatient service. Medicare
does not cover non-ambulance transportation.
The Medicare Catastrophic Coverage Act of 1988 included
significant changes to Medicaid financial eligibility rules to allow
spouses of individuals who were institutionalized to retain more
assets and income than had been previously allowed. States can also
extend these allowances to spouses of persons receiving services
under Medicaid Home and Community-Based Waivers.
A notable expansion of the Medicare program was the
Medicare Prescription Drug, Improvement and Modernization Act of
2003. This Act provides an optional prescription drug benefit for
Medicare beneficiaries with incomes below 150 percent of the federal
poverty level, and catastrophic drug protection for all beneficiaries
once established premiums and deductibles are paid. The legislation
established a series of interim demonstration plans until the year
2006, when the prescription drug coverage benefit is scheduled to
be fully implemented (SSA Web site, 2003; CMS Web site, 2003).
C. Community-Based Long-Term Care
Medicaid
Medicaid pays for long-term services provided in
the community in one of three ways:
- Within the mandatory home health state plan
benefit;
- Within the optional personal care services
state plan benefit; or
- Within 1915(c) Home- and Community-Based
Waiver Services.
Home health services are a mandatory benefit for
individuals eligible for nursing facility services. As the primary
payer for community-based long-term care and a major payer for acute
medical and behavioral health care for people with disabilities,
the Medicaid program is the major financial resource for the reforms
and studies described in the previous sections of this report (SSA
Web site, 2003; CMS Web site, 2003).
Medicaid is also the leading national payer for personal
care services, also referred to as personal attendant services,
personal assistance services, and attendant care services. States
can define the amount, duration, and the scope of their covered
personal care benefits, as long as they comply with federal requirements
that the services be
- Authorized by a physician in accordance
with a plan of treatment or, at the state’s option, otherwise
authorized in accordance with a service plan approved by the state;
- Provided by a qualified individual as defined
by the state who is not one of the individual’s “legally
responsible relatives”; and
- Furnished in a home or in the community.
The Health Care Financing Administration (HCFA, which
is the former name of the Center for Medicare and Medicaid Services)
issued a communication to the states to update their guidelines
concerning coverage of personal care in 1999. Significant provisions
included the following:
- Services can be used to support IADLs,
such as assistance with shopping, housekeeping, and transportation,
in addition to ADLs, such as bathing and feeding.
- Relatives other than “legally responsible
relatives” can be paid for providing personal care services.
- Covered services for people with cognitive
impairments can include coaching to achieve cognitive tasks.
- Consumers can direct, supervise, and train
their personal care attendants.
Omnibus Budget Reconciliation
Act 1981—Home and Community-Based Services Waiver Programs
The Medicaid Home- and Community-Based (HCBS) Waiver
Program was established in Section 2176 of the Omnibus Budget Reconciliation
Act (OBRA) of 1981. This legislation created Section 1915c of the
Social Security Act and provided an option for states to offer community-based
services to a limited group of individuals in lieu of institutional
care. States are responsible for demonstrating that the federal
funding for Waiver Services does not exceed the cost of institutional
placement for the target population, and for ensuring the health
and safety of the affected population. Passage of this statute acknowledged
the use of community alternatives for persons at risk of institutionalization.
Prior to passage of the legislation, Medicaid long-term care benefits
were restricted to home health, personal care, and institutional
facilities.
Home and Community-Based Waivers allow states to
- Provide services in the home or community
as a cost-effective alternative to institutional care;
- Divert or prevent extended institutionalization
of individuals;
- Target services to a specific group of
people;
- Limit services to a specific geographic
area by waiving Section 1902(a) (1) of the Act about the statewideness
requirement;
- Request coverage for services not otherwise
covered under the state’s Medicaid plan; and
- Expand income and asset eligibility for
this benefit to people who would not ordinarily meet Medicaid
eligibility guidelines, but would soon meet them if institutionalized
and required to pay for nursing home care.
States typically define their Waiver populations
as aged or disabled people, physically disabled people, people with
developmental disabilities, people with traumatic brain injuries,
and/or people with AIDS. Services often included in Waiver Programs
include respite care, environmental modification, personal assistance,
expanded medical equipment and supplies, expanded personal care
and personal emergency response systems, transportation, homemaker
services, adult day care, assisted living, and habilitation services.
Case management is a required service in all HCBS programs.
Although every state operates Home- and Community-Based
Waiver Services (with the exception of Arizona, which operates the
equivalent of an HCBS Waiver under a different Medicaid Waiver provision),
the services offered vary in scope and eligibility requirements.
States differ greatly in their use of HCBS Waivers and the uptake
of Waivers as substitutes for institutional care.
Although consumer direction is not required in any
HCBS programs, most states allow consumers some degree of control
over the delivery of care in at least some of their HCBS Waiver
Programs. A recent report published by the National Council on Disabilities
states, “Title XIX Waivers have significantly expanded available
funding for home- and community-based services but have not leveled
the playing field; because state governments do not recognize Home-
and Community-Based Waiver Services as entitlements, waiting lists
for Waiver services are long in most states” (Gran et al.,
2003; Smith et al., 2000; CMS Web site, 2003/2004).
Section 1115 of the Social
Security Act—Research and Demonstration Programs
Section 1115 of the Social Security Act authorizes
the Secretary of Health and Human Services to authorize experimental,
pilot, or demonstration projects to further the objectives of the
Medicaid statute. 1115 Waiver Research and Demonstration projects
allow states the flexibility to test ideas of policy merit, as long
as a commitment is made to evaluate the project and prove budget
neutrality over the life of the project. Section 1115 Waivers allow
for the expansion of eligibility to individuals not otherwise eligible
for Medicaid as long as it can be demonstrated that this expense
is covered by savings in the program model.
Some states have used this Waiver authority to expand
Medicaid eligibility for people with disabilities or develop managed
care programs. Initiatives of particular relevance to people with
disabilities authorized under 1115 Waivers include two specialized
managed care programs for people with disabilities and the Cash
and Counseling demonstration programs.
Independence Plus
Independence Plus is an initiative of CMS to assist
states with implementation of self-directed programs for people
with disabilities and their families. CMS revised and made available
two tools in the form of templates for states to expedite the Waiver
process. The standardized, Web?based 1115 Demonstration Application
allows states to extend cash allowances to eligible individuals
and families. The 1915(c) Waiver Application permits states to allow
eligible beneficiaries an individual budget to arrange for and purchase
their own personal assistance services and related supports. States
are required to indicate the number of unduplicated beneficiaries
to receive Waiver and demonstration services. Amendments to the
Waivers are required for changes to enrollment limits and must include
the results of an independent evaluation, demonstrating budget and
cost neutrality along with the ability to adequately address the
health, welfare, and satisfaction of the participants.
Section 1915(b)/(c) Waiver
Programs
Some states have combined 1915(b) authority to waive
consumer freedom of choice with 1915(c) authority to provide home-
and community-based services to individuals with disabilities and
people over the age of 64. States that choose this approach must
request and comply with the two different Waiver requirements. For
example, states must demonstrate cost neutrality to meet requirements
of the 1915(c) Waiver and cost-effectiveness to meet requirements
of the 1915(b) Waiver. Although the separate requirements and timelines
can be cumbersome, the opportunity to develop innovative managed
care systems that include
home- and community-based care has appeal. Three
examples of these combination Waivers are the Texas STAR + PLUS
program, Michigan’s Medicaid Prepaid Specialty Services (a
specialized mental health and substance use treatment program),
and Supports for Persons with Developmental Disabilities.
Older Americans Act—National
Family Caregiver Support Program
The Older Americans Act, enacted in 1965, established
the Administration on Aging within DHHS with the responsibility
to organize, coordinate, and fund community-based services (nutrition
programs, in-home services, long-term care ombudsman programs, and
health promotion) for elder Americans to remain at home and live
independently in their communities. Over time, Area Agencies of
Aging were established at the state level to promote local identification
and provision of needed services.
The Older Americans Act Amendments of 2000 authorized
continuation of the Area Agencies on Aging through 2005 and established
the National Family Caregiver Support Program (NFCSP). NFCSP provides
a range of support services to family caregivers through formula
grant funding to states and Area Agencies on Aging. Populations
particularly targeted for services include grandparents who are
caring for their grandchildren, older persons caring for adult children
with disabilities, and minority elders. 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.
Many of the recently awarded NFCSP grants include innovative demonstrations
for people with disabilities.
Lifespan Respite Care Act of
2003
The Lifespan Respite Act of 2003 was proposed as
an amendment to the Public Health Service Act to provide information
and fund respite care for unpaid family caregivers of individuals
of all ages (children and adults) with special needs or disabling
and chronic conditions. The Senate version (S. 538) was passed unanimously
and joined the House version (HR 1083) for referral to the House
Energy and Commerce Committee for consideration.
Family and Medical Leave Act
The Family and Medical Leave Act (FMLA), enacted
in 1993, is the first federal policy intended to directly benefit
family caregivers, although not specifically caregivers of people
with disabilities. It allows for employees to have 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. This law 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 current employers
for a year or more. However, it can be and is used to care for family
members with disabilities.
D. Employment and Economic Independence
Ticket-to-Work and Work Incentives Improvement Act
(TWWIIA)
Enacted in December 1999, TWWIIA was designed to
provide states with the tools to allow people with disabilities
to seek employment without fear of losing Medicare and/or Medicaid
coverage. On the premise that employment will reduce or eliminate
dependency on two cash benefit programs (Social Security Income
and Social Security Disability Insurance), “tickets”
are provided to people with disabilities, who can redeem them at
Employment Network (EN) providers for services to find, enter, and
retain self-supporting employment. EN providers are responsible
for the coordination and delivery of employment services, vocational
rehabilitation, and other support services.
Over a five-year period, the Social Security Administration
intends to award cooperative agreements to Benefits Planning, Assistance
and Outreach projects, to offer beneficiaries with disabilities,
aged 18 to 65, and their families (including transition-to-work
aged youth) access to benefits planning and assistance services
for participation in TWWIIA and other work incentive programs on
a voluntary basis.
TWWIIA and the Balanced Budget
Act of 1997—Medicaid Buy-In Programs
Two pieces of federal legislation, the Balanced Budget
Act of 1997 (BBA) and TWWIIA of 1999 provide the statutory authority
for states to implement Medicaid Buy-In programs for people with
disabilities who work or want to work. The statutes also allow states
to expand income thresholds and waive asset limits as well as encourage
workers to accrue modest savings for the future from their earned
income. The goals of the Medicaid Buy-In option for workers with
disabilities include the following:
- To ensure access to comprehensive health
benefits for individuals with significant disabilities who would
otherwise lose or not be eligible for Medicaid because of earned
income or accumulated assets;
- To provide wraparound coverage (such as
prescription drugs, durable medical equipment, and personal assistance
services) for workers with disabilities who are enrolled in Medicare
or have other private health insurance coverage; and
- To promote economic security and self-sufficiency
among individuals with disabilities who are primarily dependent
on disability cash benefits.
These laws give states flexibility in the design
of their programs. Most states have targeted their Buy-In programs
to the SSDI population to address the inadequacy of the Medicare
benefit, particularly for prescription drugs and durable medical
equipment. Medicaid Buy-In programs complement the 1619b program
for SSI recipients. They permit beneficiaries to earn and save money
they would otherwise be unable to save due to Medicaid eligibility
restrictions. The 1619b Program allows SSI recipients to supplement
earnings with cash benefits and maintain their eligibility for Medicaid
as earnings increase (University of Iowa Web site, 2003).
Appendix J.
Medicaid
Managed Care Policy Trends and Program Descriptions
The Balanced Budget Act of 1997 allowed states more
freedom in designing managed care programs for Medicaid beneficiaries
with and without disabilities. Specifically, states no longer have
to request a federal waiver to require most adults with disabilities
to receive care through managed care systems. Thirty-six states
now enroll at least some of their Medicaid beneficiaries with disabilities
in managed care programs, and it is estimated that 27 percent of
non-elderly people with disabilities are enrolled in Medicaid managed
care (Regenstein and Schroer, 1998).
States use a variety of contracting and financing
models in their managed care programs for people with disabilities.
In terms of finance strategies, some states use capitation, others
use gatekeeper models without capitation, while others use a combination
of the two methods. A few states use health-risk-adjusted payments
to compensate plans for enrolling individuals with above-average
health care needs, but this practice is not widespread. States also
vary in terms of whether programs are mandatory or voluntary for
individuals with disabilities and the scope of benefits included
in the managed care package (Regenstein and Schroer, 1998). Behavioral
health services, in particular, are handled very differently from
state to state. Some include behavioral health in the managed care
benefit, while others keep behavioral health as a fee-for-service
benefit. Still other states “carve out” behavioral health
from the MCOs and contract with separate behavioral health managed
care entities to manage this benefit.
The majority of states keep people with disabilities
in their Medicaid fee-for-service systems, enroll them in primary
care gatekeeper programs, or enroll them in mainstream MCO organizations.
People who are dually eligible for Medicaid and Medicare, including
most Medicaid beneficiaries over the age of 65, are less likely
to be required to enroll in managed care. A few states, however,
have developed specialized managed care programs for people with
disabilities and people who are dually eligible for Medicaid and
Medicare. A comprehensive national summary of state Medicaid managed
care programs (as of June 30, 2002) can be found on the CMS Web
site.
Specialty Managed Care Programs
Although managed care, in general, emphasizes centralized
control of acute medical care, some specialized managed care structures
have been developed for people with disabilities. These specialized
managed care programs cover less than 1 percent of all non-elderly
beneficiaries with disabilities in managed care (Regenstein and
Schroer, 1998), and they tend to target a specific group of people
with disabilities, such as dually eligible older people, adults
with physical disabilities, or children with special health care
needs. Examples of specialized managed care programs targeting specific
populations are provided below.
Program of All-Inclusive Care
for the Elderly (PACE)
PACE is a national voluntary managed care program
for people over the age of 54 who are certified to need nursing
home care and who receive their health care coverage through some
combination of Medicaid and Medicare. CMS pays PACE programs special
capitation rates that recognize the individual’s risk of nursing
home placement, with formulas for the contribution of both Medicare
and Medicaid payments based on the person’s eligibility status
with those programs. PACE programs coordinate the medical and support
services of enrollees with the goal of sustaining their autonomy
as long as possible (NPA Web site, 2004). They provide a full continuum
of primary, acute, behavioral, and long-term care services, usually
coordinated around an adult day health program that participants
are required to attend. Participants receive their care from a multidisciplinary
PACE clinical team or contracted providers, and are generally required
to switch their primary care to a PACE physician. Thus, although
there are 43 PACE sites in 21 states, total enrollment in the PACE
programs is much smaller than the eligible population. At the end
of 2001, only 7,335 individuals were enrolled in PACE programs nationwide
(NPA Web site, 2004).
Wisconsin Partnership Program
The Wisconsin Partnership Program is a voluntary
managed care program that serves adults with physical disabilities,
modeled after the PACE program, but available to younger as well
as older adults. Enrollees must be eligible for Medicaid, may also
have Medicare coverage, and must be certified by their state as
eligible for nursing home care (WI DHFS Web site, 2004). The Partnership
Program uses a capitated payment structure and integrates medical
and long-term care services through the use of team-based care management.
The team includes the enrollee, physician, nurses, and social workers
who work together to create a care plan for the enrollee (WI DHFS
Web site, 2004). Partnership enrollees are not required to participate
in an adult day health program and may keep their existing primary
care provider. Of note, two of the MCOs that operate the Partnership
program evolved out of Independent Living Centers. As of January
2003, 1,384 individuals were enrolled in the Partnership Program
in two different areas of Wisconsin (WI DHFS Web site, 2004).
Minnesota Senior Health Options
(MSHO)
MSHO is a specialty managed care program offered
by the Minnesota Department of Human Services that serves people
over the age of 64 who are eligible for Medicaid and Medicare (MN
DHS Web site, 2004). Both Medicaid and Medicare contribute funding
for this voluntary program, which is administered by the state to
participating MCOs. MSHO provides access to preventive, medical,
long-term care, and support services. The program is operated by
MCOs that provide each enrollee with a care coordinator who assists
with paperwork, arranging services, and answering questions (MN
DHS Web site, 2004). A report released by the state in September
2003 showed that just over 5,000 individuals were enrolled in MSHO
(MN DHS Web site, 2004).
Minnesota Disability Health
Options (MnDHO)
MnDHO is a voluntary managed care program for working-age
adults with physical disabilities who are either eligible for Medicaid
or dually eligible for Medicaid and Medicare. It is modeled to some
extent after MSHO (MN DHS Web site, 2004). However, MnDHO is operated
by a partnership between a commercial managed care organization
(UCare) and an organization formed by a partnership of disability
advocates and providers (Axis). Axis is responsible for the coordination
and authorization of care and played a major role in the development
of the provider network and preventive primary care protocols for
members. Axis uses a consumer advisory committee to assist in developing
and reviewing the managed care organization’s policies, procedures,
and operations. MnDHO currently has 320 members in the Twin Cities
area of Minnesota and is growing rapidly.
Community Medical Alliance
(CMA)
CMA is a voluntary Medicaid managed care program
operated by the Neighborhood Health Plan in Massachusetts. CMA has
several different clinical programs for specific groups of people
with disabilities, including working-age adults with severe physical
disabilities, people with AIDS, medically fragile foster children,
children with physical disabilities, and children with serious emotional
disturbances. The health plan receives special capitation payments
for each of these programs; each program offers clients a special
network of providers knowledgeable about the needs associated with
their particular condition and home-based care provided by nurse
practitioners or in some cases physicians or mental health providers.
Approximately 500 individuals are enrolled in the CMA programs.
MassHealth Senior Care Options
(SCO)
SCO is a managed care program for people over the
age of 64 who live in Massachusetts and are eligible for Medicaid
or Medicaid and Medicare. SCO is designed as a coordinated health
plan to provide comprehensive coverage for all services covered
by Medicaid and Medicare. Enrollees will have a primary care physician
in the SCO network who, along with the enrollee, a team of nurses,
specialists, and a geriatric support services coordinator, will
create a plan of care tailored to the enrollee’s specific
health care needs (MA DMA Web site, 2004). This new program began
enrollment in the spring of 2004.
Health Services for Children
with Special Needs (HSCSN)
HSCSN is a voluntary managed care program for SSI-eligible
children in the District of Columbia. All Medicaid benefits, including
acute medical care, behavioral health care, and residential care,
are covered in this program, as well as care coordination, outreach
services, respite care, home modifications, and behavioral and developmental
wraparound services. HSCSN began as an 1115 waiver demonstration
project in 1995, and currently serves 2,800 of the children who
receive SSI benefits in the District of Columbia, more than 80 percent
of the eligible population (HSCSN Web site, 2004). The program operates
under a risk-sharing agreement between Medicaid and the managed
care organization. A central feature of the program is a care management
team that works with each family and the child’s primary care
provider. An independent evaluation found that access to care was
equal to or better than previous fee-for-service arrangements; however,
the demonstration program experienced financial losses and difficulty
coordinating with other agencies serving the same children (Coulam
et al., 2000).
Children’s Choice
Children’s Choice in Michigan is a specialized
Medicaid managed care program for children who are dually eligible
for services provided by the state’s Maternal and Child Health
Block Grant (Title V) program and Medicaid. These children are eligible
to enroll in the program up to age 21 or older if they have cystic
fibrosis or hemophilia (CCOM Web site, 2004). Children’s Choice
involves the enrollee and his or her family in decisionmaking around
the child’s health care and in the development of an Individualized
Health Care Plan that serves as the basis for coordinated efforts
on the part of enrollee, family, a principle physician, and a care
coordinator (CCOM Web site, 2004).
Medically Fragile Children’s
Program (MFCP)
MFCP is a voluntary managed care program that began
as a program for medically fragile children in Columbia, South Carolina,
in 1996. The founders of MFCP modeled it after the PACE programs,
using a multidisciplinary team to provide care. However, the setting
for care is a daycare center rather than an adult day health program,
and none of the children have Medicare insurance coverage. The program
began as a partnership between the state’s child welfare system
and Medicaid for foster children, but is now available to any Medicaid-eligible
child who meets clinical criteria and has expanded to other parts
of South Carolina. The team approach to care includes parents, a
pediatrician, a pediatric nurse practitioner, nurses, social workers,
pharmacists, physical therapists, occupational therapists, speech
therapists, a dietitian, psychologists, and home care technicians.
One of the challenges MFCP faced is that children whose health improved
had to be discharged from the program because they no longer met
program eligibility criteria. However, some of these children’s
health deteriorated after discharge because they no longer received
the services that helped to keep them healthy. MFCP recently introduced
a Step-Down program for graduates in order to continue providing
support services.
Summary
In general, managed care has changed the structure
of service provision by incorporating some form of centralized oversight
into the care of each individual. While fee-for-service health care
offers consumers relative freedom to choose their providers (if
the service is reimbursable and available in their area), it offers
almost no assistance to those in need of coordinated or comprehensive
care. Although specialty managed care programs differ from one another
in many ways, the premise of comprehensive, coordinated care with
consumer autonomy or involvement is often present. Specialty Medicaid
managed care programs, by virtue of their planning capabilities,
are designed to provide the support for coordinated and comprehensive
care. These benefits of managed care have the potential to make
an especially good marriage with long-term care because long-term
care needs are relatively predictable and lend themselves to planning.
Appendix K.
Summary
of Preference Study Similarities and Differences
Six of the preference studies were conducted in one
state or large city, and one was conducted nationally. Sample sizes
ranges from 168 (a universal sample) to 1,102 (a nationally representative
sample). Four of the studies were random samples, one was a universal
sample, and one was a convenience sample. We included the convenience
sample in this review because it was the main source of information
about racial and ethnic differences in consumer preferences for
consumer-directed care. Four of the studies restricted their sample
to Medicaid recipients of Home- and Community-Based Waiver Services
or personal assistance services; the respite caregiver study sample
consisted of moderate- or low-income families who did not qualify
for Medicaid, and the other two studies included a more heterogeneous
population in terms of income or health coverage.
All of the studies included individuals over the age
of 65, and most included individuals with disabilities under the
age of 65. However, the Sciegaj et al., 2004, study that looked
at ethnic and racial factors included only individuals over the
age of 65. Most of the studies also included individuals with physical
disabilities. One study was conducted exclusively among individuals
with developmental disabilities, and one study explicitly mentioned
the inclusion of individuals with cognitive disabilities. Five of
the studies permitted surrogate responders, and the family caregiver
study targeted families caring for people with cognitive disabilities.
None of the studies mentioned the inclusion of individuals with
psychiatric disabilities.
In most of the studies, the vast majority of respondents
were female. The two exceptions were the national sample of elders
with disabilities living in the community (Gibson et al., 2003)
and the Simon-Rusinowitz et al., 2001, study of adults with developmental
disabilities in Florida. Although the Gibson et al., 2003, study
respondents were diverse in gender, they were predominantly white.
Three of the studies included sizable samples of racial/ethnic minorities:
the Simon-Rusinowitz et al., 1997, study in Arkansas; the Sciegaj
et al., 2004, study in Boston; and the Mahoney et al., 1998, study
in New York. Just as there was wide variation in the demographic
characteristics of the populations studied, there was also diversity
in peoples’ living situations and health status. The respondents
in the Florida study of individuals with disabilities, for example,
reported much better health status than the community-dwelling elders
in Boston.
It is important to note that in the Feinberg and
Whitlatch, 1998, study of caregivers, the care receivers were majority
male (53 percent), had an average age of 67.5, and had seriously
debilitating chronic illnesses, such as stroke, Alzheimer’s,
dementia, brain tumors, or traumatic brain injuries.
Appendix L.
Summary
of Long-Term Care Outcome Study
Similarities and Differences
None of the studies were national, but rather were
concentrated in individual states: including California, Maryland,
Michigan, Texas, Virginia, and Arkansas. Samples ranged from 92
to 1,739, with the larger studies permitting stratification by both
age (over and under 65) as well as program model (consumer direction
vs. agency direction). Those studies that used random or universal
samples achieved fairly high response rates.
Six of the studies included people over the age of
65 (Beatty et al., 1998, being the exception), and six also included
adults with disabilities under the age of 65 (Doty et al., 1996,
being the exception). Six of the studies focused primarily on individuals
with physical disabilities and chronic illnesses. Of these, one
permitted proxy respondents, four excluded individuals with cognitive
impairments who could not participate in an interview, and one did
not mention the use of proxies. The sixth study was conducted of
family caregivers, who cared primarily for individuals with cognitive
disabilities. None of the studies addressed consumer-directed care
for individuals with psychiatric disabilities.
With the exception of the Beatty et al., 1998, study
of individuals with physical disabilities in Virginia, the majority
of study participants were female. Several studies included a sample
large enough to divide into two age groups for comparative purposes,
those age 65 and older, and those under age of 65. With the exception
of the Benjamin et al., studies in California, all of the research
was conducted among individuals who were predominantly Caucasian.
This is particularly interesting in the Foster et al., 2003, study
of Cash and Counseling demonstration in Arkansas, because in the
Simon-Rusinowitz et al., 1997, study described above, being black/African
American was a predictor of consumer interest in self-direction
prior to implementation of the Cash and Counseling demonstration.
The Benjamin et al., studies, on the other hand, had strong participation
rates on the part of racial/ethnic minorities. The education level
of study participants spanned a wide range, with the general trend
of younger adults being more likely to have at least a high school
education than older adults.
Appendix M.
Key
Informants’ Responses to Research Priorities
In the course of key informant interviews,
we asked each informant, “If you could fund one research project
concerning long-term care for people with disabilities, what is
the topic you would look at?” The following responses are
grouped by the informants’ area of expertise.
Long-Term Care
I would fund a project that aimed to find an equitable
way to determine the cash allowance adequate to meet the consumer’s
needs.
I would fund something around service coordination
that helps people across the board (not just children, or people
in vocational rehabilitation).
I would like to know how different disability advocacy
groups perceive the definition and application of consumer direction
and how this differs by group (MR/DD, physically disabled, parents
of CSHCN, and persons with mental health care issues).
I’d like a massive, intensive evaluation of
what happens with Florida’s System of the Future initiative.
I’d like to study empowerment. Does Self-Direction
really empower people? How? When? Is it a good thing or not?
I’d like to understand why people enter long-term
care facilities as opposed to remaining in the community. What is
the unique set of circumstances that prompts people to make that
move?
I would like to look at liability issues. There are
many small programs operating without fiscal intermediaries. As
these programs grow, this will become a bigger deal, potentially
squashing growth. I’d also like rigorous studies of broader
models of consumer direction, not just Cash and Counseling. And
I’d like to look at risk management: what risks do consumers
naturally take on, even in status quo (e.g., under Medicaid, they
regularly have no backup, but Independence Plus requires it).
I would like to find out how many consumer-directed
programs are actually out there, working. There are so many programs
at various levels that we really do not have a handle on the number
and types of programs out there.
I’d look at the role of case manager/service
brokers in self-direction.
I want to know what would it really cost to get it
really right for everyone with a disability, and what is it costing
getting it wrong (e.g., lost wages, lost opportunities, etc.). Also,
regarding the woodwork effect—who are the people that are
not costing anything now but would come out of the woodwork if resources
were available?
I would like to tap in to these different groups
(younger adults with disabilities, the elderly, CSHCN, people with
DD, people with mental health issues).
I would like to answer the questions: What is the
appropriate role for institutions in this country? Is there a role?
Who should they be serving? Can deinstitutionalization go too far?
We need to define and measure consumer involvement.
An interesting study would be to look at consumer governance versus
some predefined level of consumer involvement versus nothing.
I’ve been pushing for a meta-analysis. Also,
Florida and Iowa are consolidating lots of their long-term care
programs; eligibility—we should keep our eyes on those states.
I’d like to see this idea expanded further
in terms of feasible ways—especially nursing home transitions.
I’d like to somehow identify the factors that
make life satisfying/bearable for people with disabilities and translate
them into public policy. People with disabilities piece together
their lives and services in such different ways. If we could create
a hierarchy of what is needed, that would be excellent. Also, in
the world of policy, there is cash payment, vouchers, training programs,
transportation—what of this is useful and to what extent?
Also, we should look at the ridiculous rules of Medicare, etc.,
that don’t really work for people with disabilities.
I’d like a study of what the world is going
to look like in 20 years.
I actually think we know enough to know what works.
I don’t want to get into the business of suggesting we need
a lot more research before moving forward. We should move forward
and maybe evaluate what we do.
We should look at what, if any, are the adverse effects
of Cash and Counseling.
I would love to know where most young people with
disabilities (i.e., graduates of special ed. programs) are living
now. With whom? Why? How satisfactory is this life? What financial
supports are there? I think the answer will be that 19- to 35-year-olds
are living with family members. Until we know the living circumstances,
we will not know the extent of the costs.
I would like to study what individualization means
to people with disabilities in a whole variety of areas and find
ways that the general population can see that individualization
for people with disabilities is parallel to how they view individualization.
I would also like to work with the disability community to find
ways to use their protected status as a countervailing force to
market pressures...strategies for social change.
I’d like to study uses of the Internet—how
information can be sent to older adults and people with disabilities,
and how it can be used to train them, link them to services. We’d
also have to study how people judge the validity of information
on the Internet and how they make informed decisions.
I’d like to have funded a demonstration that
allows for the development of a full continuum of services to meet
all the chronic needs of persons residing in a community. We could
show the OMB [Office of Management and Budget] and the policymakers
a system that is cost-effective, safe, of quality, independence-oriented;
one that is equal if not better than the existing system. We need
to show them it is possible.
I’d like to determine how great the unmet needs
are and how you can better manage the way people begin to receive
services if this consensus is in place.
Managed Care
I’d find out what really works and what doesn’t
by finding a way to compare various CMS projects with one another.
Then, we could develop better measures of quality of life.
I’d like to know whether, if all basic needs
were met and supported (housing, transportation, etc.), the overall
medical costs would decrease (we must also account for lost days
of work, productivity, etc.).
I’d love to have a study that would tap into
the various groups of people with disabilities. We naturally assume
that younger adults with disability embrace consumer-directed care,
but we haven’t seen large-scale studies. Is this a huge advance
for them, or an additional burden?
I would look at the efficacy of diversion. I would
also look heavily at satisfaction. At the end of the day, everyone
is trying to provide consumer choice in a safe and cost-effective
way. We need to be able to say, with control groups, that these
programs are effective.
I’d like to get health care users (who run
the disability/age spectrum) together to say what they need to get
decent health care, what they believe would happen in their lives
if they got decent health care, and to give personal examples of
the barriers they’ve faced and the results of these barriers.
I’d also have at the table people with successful experiences
in health care to talk about what it took for them to get good health
care. From this discussion, we’d derive good interventions
that lead to empowerment and action.
Children with Special Health Care Needs/Medical
Homes
I’d like something on the communication between
physicians and families and their partnership. I’d like to
see documentation that good communication leads to a successful
child with health, self-esteem, and view-of-the-future outcomes.
I’d like to look at quality of life and health
care status. We look at the Band-Aid part of health care, but we
don’t look at how we can really support the kids in inclusion
in the community, etc.
I would like to study the connection between the
medical home and the family home.
We should be measuring and monitoring medical homes.
We’ve done a lot of research on implementation. Now, we must
develop a consistent definition and measurable outcomes, and tools
to do this measuring.
It’s not that simple, and not just one topic—the
medical home model entails changes in many elements. I’d want
to see a multistate, multisite, infant follow-up model, studying
developmental outcomes of high-risk newborns, systemizing the methodology,
funding, and enhanced home visiting. Must have multisite trials,
enroll tons of kids, vary treatments slightly with different doses.
I’d also like to know whether developing a parental advisory
council is really helpful.
I would develop a three-group project with random
assignations that varied critical dimensions of the medical home
model: (a) with different level of funding for pediatrician medical
home services and (b) with improved communication. This would get
to the heart of whether it is the money or the change of behavior
that will be most successful in creating a medical home.
I would assess how and why medical homes work within
a variety of settings, funding schemes, demographics, and diagnoses.
I would also be tempted to do a medical home transition project
for youth with special health care needs, including kids with mental
health diagnoses.
Mental Health
First, we need to see if communities are ready to
accept parity. We also should research the disparities in the U.S.
government between mental health and DD policy and funding (e.g.,
how much people are paid, our expectations of them, etc.).
We should do a project on economic issues. Realistically
to change the system, policymakers need to look at money; the more
research there is showing that implementing parity costs little
money and will have cost-saving long-term benefits, the more likely
legislation for parity will pass. The project should also address
that mental illness accounts for 4 of the top 10 causes of disability
in the Global Burden of Disease.
In the places where parity exists, we need to better
study access and outcomes.
Appendix N.
Mission
of the National Council on Disability
Overview and Purpose
The National Council on Disability (NCD) is an independent
federal agency with 15 members appointed by the President of the
United States and confirmed by the U.S. Senate. The overall purpose
of NCD is to promote policies, programs, practices, and procedures
that guarantee equal opportunity for all individuals with disabilities
regardless of the nature or significance of the disability and to
empower individuals with disabilities to achieve economic self-sufficiency,
independent living, and inclusion and integration into all aspects
of society.
Specific Duties
The current statutory mandate of NCD includes the
following:
- Reviewing and evaluating, on a continuing
basis, policies, programs, practices, and procedures concerning
individuals with disabilities conducted or assisted by federal
departments and agencies, including programs established or assisted
under the Rehabilitation Act of 1973, as amended, or under the
Developmental Disabilities Assistance and Bill of Rights Act,
as well as all statutes and regulations pertaining to federal
programs that assist such individuals with disabilities, to assess
the effectiveness of such policies, programs, practices, procedures,
statutes, and regulations in meeting the needs of individuals
with disabilities.
- Reviewing and evaluating, on a continuing
basis, new and emerging disability policy issues affecting individuals
with disabilities at the federal, state, and local levels and
in the private sector, including the need for and coordination
of adult services, access to personal assistance services, school
reform efforts and the impact of such efforts on individuals with
disabilities, access to health care, and policies that act as
disincentives for individuals to seek and retain employment.
- Making recommendations to the President,
Congress, the Secretary of Education, the director of the National
Institute on Disability and Rehabilitation Research, and other
officials of federal agencies about ways to better promote equal
opportunity, economic self-sufficiency, independent living, and
inclusion and integration into all aspects of society for Americans
with disabilities.
- Providing Congress, on a continuing basis,
with advice, recommendations, legislative proposals, and any additional
information that NCD or Congress deems appropriate.
- Gathering information about the implementation,
effectiveness, and impact of the Americans with Disabilities Act
of 1990 (ADA) (42 U.S.C. § 12101 et seq.).
- Advising the President, Congress, the commissioner
of the Rehabilitation Services Administration, the assistant secretary
for Special Education and Rehabilitative Services within the Department
of Education, and the director of the National Institute on Disability
and Rehabilitation Research on the development of the programs
to be carried out under the Rehabilitation Act of 1973, as amended.
- Providing advice to the commissioner of
the Rehabilitation Services Administration with respect to the
policies and conduct of the administration.
- Making recommendations to the director
of the National Institute on Disability and Rehabilitation Research
on ways to improve research, service, administration, and the
collection, dissemination, and implementation of research findings
affecting persons with disabilities.
- Providing advice regarding priorities for
the activities of the Interagency Disability Coordinating Council
and reviewing the recommendations of this council for legislative
and administrative changes to ensure that such recommendations
are consistent with NCD’s purpose of promoting the full
integration, independence, and productivity of individuals with
disabilities.
- Preparing and submitting to the President
and Congress an annual report titled National Disability Policy:
A Progress Report.
International
In 1995, NCD was designated by the Department of
State to be the U.S. government’s official contact point for
disability issues. Specifically, NCD interacts with the special
rapporteur of the United Nations Commission for Social Development
on disability matters.
Consumers Served and Current
Activities
Although many government agencies deal with issues
and programs affecting people with disabilities, NCD is the only
federal agency charged with addressing, analyzing, and making recommendations
on issues of public policy that affect people with disabilities
regardless of age, disability type, perceived employment potential,
economic need, specific functional ability, veteran status, or other
individual circumstance. NCD recognizes its unique opportunity to
facilitate independent living, community integration, and employment
opportunities for people with disabilities by ensuring an informed
and coordinated approach to addressing the concerns of people with
disabilities and eliminating barriers to their active participation
in community and family life.
NCD plays a major role in developing disability policy
in America. In fact, NCD originally proposed what eventually became
the ADA. NCD’s present list of key issues includes improving
personal assistance services, promoting health care reform, including
students with disabilities in high-quality programs in typical neighborhood
schools, promoting equal employment and community housing opportunities,
monitoring the implementation of the ADA, improving assistive technology,
and ensuring that those persons with disabilities who are members
of diverse cultures fully participate in society.
Statutory History
NCD was established in 1978 as an advisory board
within the Department of Education (P.L. 95-602). The Rehabilitation
Act Amendments of 1984 (P.L. 98-221) transformed NCD into an independent
agency. |
