Consumer-Directed 

Health Care: 

How Well Does It Work?

National Council on Disability 

October 26, 2004
National Council on Disability 

ite 850 

04 

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

www.ncd.gov). 

Publication date: October 26, 2004 

202-272-2004 Voice 

202-272-2074 TTY 

202-272-2022 Fax 

The views contained in this report do not necessarily represent those of the Administration, as 

this and all NCD documents are not subject to the A-19 Executive Branch review process. 

1331 F Street, NW, Su

Washington, DC 200

C

This report is also available in alternative formats and on NCD’s award-winning Web site 

(

 NATIONAL COUNCIL ON DISABILITY

An independent federal agency working with the President and Congress to increase the 

inclusion, independence, and empowerment of all Americans with disabilities.

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.) 

1331 F Street, NW  Suite 850  Washington, DC 20004 

202-272-2004 Voice  202-272-2074 TTY  202-272-2022 Fax  www.ncd.gov

1 
2 
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 

3 
4 
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. 

5 
6 
Contents 

I. Executive Summary.............................................................................................................9

Need for a Study of Consumer-Directed Health Care .........................................................9 

What NCD Found ..............................................................................................................10 

Recommendations..............................................................................................................11 

Policy and Program Recommendations.............................................................................12 

Research Recommendations..............................................................................................14 

.........................17

C. D

.........................21

IV. Program

n

T

T

.............51

A. D

ic 

Fa

D

C

Is

B

Fa

VIII. Recommendations to Policymakers...................................................................................99 

A. Core Recommendation.........................................................................................100 

B. Policy and Program Recommendations...............................................................101 

Conclusions........................................................................................................................16 

II. Introduction........................................................................................................................17

A. Background...................................................................................

B. Methods..................................................................................................................17 

efinitions..............................................................................................................19 

D. Overview of Report.......................................................................

III. Legal and Regulatory Framework for Consumer Direction ..............................................23 

and Policy Trends................................................................................................25 

A. I troduction............................................................................................................25 

B. Trends in the Financing of Care.............................................................................25 

C. rends in the Structure of Care..............................................................................34 

D. rends in the Process of Care ................................................................................41 

V. Outcomes of Consumer-Directed Health Care .....................................................

oes Preference for Consumer-Directed Health Care Vary by the Nature of 

the Disability, Age, or Other Demographic, Geographic, or Socioeconom

ctors?..................................................................................................................52 

B. oes Consumer-Directed Health Care Lead to Different Outcomes for 

onsumers?............................................................................................................60 

C. Consumer-Directed Health Care Cost-Effective or Cost Neutral? ....................71 

VI. Lessons Learned About Implementing Effective Reforms and Strategies........................81 

A. arriers to Implementation ....................................................................................81 

B. cilitators of Implementation...............................................................................88 

VII. The Role of Federal Agencies in Promoting Research......................................................91 

7 
C...................................................................................Research Recommendations 104

D. Conclusions..........................................................................................................109 

IX. References........................................................................................................................111

....123

25

...127

.....145

t...........................................................................................157 

Appendix G.1. Consumer-Directed and Consumer-Oriented Health Care for People 

65

.......187

91

erences..193 

Appendix M. Key Informants’ Responses to Research Priorities..........................................195 

.........201

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......................................................................1

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 ..........................................................................................131 

Appendix C.3. NCD National Consumer Advisory Board Meeting Minutes, 

March 17, 2004 ................................................................................................135

Appendix D.1. Outcomes Literature Review Protocol .............................................................139

Appendix D.2. Policy Study Protocol.......................................................................................143

Appendix E. Consumer-Oriented Managed Care Outcomes ...........................................

Appendix F. Key Informant Lis

with Disabilities................................................................................................161

Appendix G.2. Consumer-Directed and Consumer-Oriented Health Care for People 

with Disabilities................................................................................................1

Appendix H. Federal Legislation Intended to Serve Persons with Disabilities.....................169

Appendix I. Overview of Laws and Legislative Initiatives..................................................177

Appendix J. Medicaid Managed Care Policy Trends and Program Descriptions........

Appendix K. Summary of Preference Study Similarities and Differences............................1

Appendix L. Summary of Long-Term Care Outcome Study Similarities and Diff

Appendix N. Mission of the National Council on Disability........................................

8 
I. 

Executive Summary 

Need a S

The past 30 ye

While that revolution has found expression in most social domains, health care has lagged 

behind. eri l 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 

ted 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 com unit

telerehabilitati f

institution-to-c that Medicaid

recipien are p

individual’s ho

Literature in th est

innovative mo

site to site, ma

to the full-scal out

consumer-dire

researc indin ay

we plan, imple

This study incl

consumer-dire

advisory board

research, polic

for tudy of Consumer-Directed Health Care 

ars have seen a revolution in the way disability is addressed in American society.

Am ca’s system of health care has traditionally maintained an institutiona

explored consumer-direc

m y-based health care, long-term personal assistance services, and telemedicine and

on. Most recently, the Olmstead Supreme Court decision has provoked a wave o

ommunity planning among states that are responsible for ensuring

ts rovided health care in the most integrated setting appropriate, typically the 

me and community. 

e field of consumer-directed health care is limited. Many of the programs that t

dels are too small to yield definitive data, and programs differ sufficiently from

king meta-analysis challenging. Neither funding nor leadership has been directed 

e, multifaceted evaluation required to teach us what we would like to know ab

cted and -oriented care for people with disabilities. Despite these limits in 

h, f gs show that enough has been learned to support important changes in the w

ment, and pay for the long-term care of individuals with disabilities. 

udes a systematic review of the literature (both print and Web-based) on 

cted and -oriented care. It was shaped by guidance from a national consumer 

and refined based on interviews with key informants in relevant fields of 

y, and program administration. The study addresses four critical questions: 

9 
1. 

d to what extent have different models been studied?

3. 

afety

4. 

What NCD

• 

• 

r -oriented health care models varies. Younger 

individuals seem to be more interested in consumer direction than older 

s, and there appear to be different preferences among race/ethnicity 

groups. However, sufficient local variability in preferences by race/ethnicity 

nt in other

of

What form does consumer direction and orientation take in health and related 

services, an

2. 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 s

or well-being of consumers? 

Are consumer-directed and -oriented models of care cost-effective?

Found

The best studied examples of consumer direction have been in the area of longterm 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 o

individual

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 evide

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

medical homes for children with special health care needs and mental health 

parity have promoted a new emphasis on consumer-oriented, community-based

10 
care for children with special health care needs and individuals with menta

diagnoses. 

l health

• Studies of consumer direction indicate positive outcomes in terms of consumer 

nce

ars to be

ess

.

-

effectiveness. For example, (a) some research documents consumer-directed care 

t for the

fact,

rtages, while other studies vary in

their treatment of out-of-pocket expenditures or uncompensated care provided by 

Recom en

NCD’s recomm ings reported above. They also reflect a review 

of the policy literature concerning barriers and facilitators to consumer-directed care and the 

thesize

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 

of research and the design of services, is 

applicable to a wide range of governm

policies or program

Administration on Developm

though it is not their focus (e.g., 

satisfaction, quality of life, and perceived empowerment. There is no evide

that consumer direction compromises safety—in fact, the opposite appe

true. Individuals who have participated in consumer-directed systems expr

strong preference for consumer direction and satisfaction with their care

• Variations in study design lead to conflicting results on the issue of cost

as more cost-effective than agency-directed care and community-based care as 

more cost-effective than institutional care; (b) some studies do not accoun

potential cost of services authorized by agency providers that were not, in

delivered to consumers owing to personnel sho

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. 

m dations 

endations reflect the research find

comments of consumer advisors and other key informants who helped the study team syn

and interpret the research direction and findings. Because sound program and policy decisions 

recommendation, which touches on both the conduct

ent agencies—those that play an explicit role in disability 

s (e.g., the Social Security Office of Disability Determinations, the 

ental Disabilities) and those that have an impact on disability even 

the Administration on Aging, the Food and Nutrition Service 

11 
Food Stamp Pr

business is con

Consumers re

in decisionma

from developm

to program design, oversight, and evaluation. Consumers provide a truly unique 

source of info

The recommen ent 

one and reject

implem

disabilities. Th

• 

is feasible in relation to a given type of care. 

e

• 

nd perspectives must be included at all stages of program design, 

The achieveme

oversight autho

Policy a d Progra

A. 

disabilities. The market has not, on its own, created the continuum of services 

ogram)—and private sector organizations. It calls for a change in the way 

ducted by funders, policymakers, and researchers in this field: 

presenting a wide range of disability perspectives should be included 

king at every step in the process that ultimately shapes programs: 

ent and implementation of a research agenda through policymaking 

rmation about the human services and health care delivery system.

dations presented briefly below can each stand alone—it is possible to implem

others. But they also reflect a coherent overall approach to the design and 

entation of consumer-directed or -oriented health care programs for people with 

e following are key elements of this approach: 

Services need to be individualized, with consumers offered as much flexibility 

and choice as

• Services should, wherever possible, be designed to serve individuals with a broad 

range of disabilities. This flexibility will yield more individualized and therefor

better services for individuals within, as well as across, disability groups. 

To achieve flexibility and accommodate diversity, consumers with different 

experiences a

implementation, and evaluation. 

nt of these recommendations requires the designation or establishment of 

rity within the federal government to coordinate and achieve their inherent goals.

n m Recommendations 

Establish a locus of responsibility for programs and services within the 

federal government related to the health and well-being of individuals with

12 
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 

al

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 

tion

ong 

ss

E.

or -oriented health care. While cost-effectiveness is always important

ay 

erm

F.

in

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 institution

settings. Both studies and interviews

and services. 

D. Do not advance choice at the expense of quality or accountability. The op

to participate in a consumer-directed program should not be traded off against 

accountability for entitlement programs. The right of consumers to choose am

service options does not absolve agencies of responsibility for ensuring acce

and quality. 

Do not build expectations of cost savings into the start-up of consumerdirected

in publicly funded programs, start-up of new or modified program models m

lead to increased costs in the early days of programs that may result in long-t

efficiencies, savings, or cost neutrality. 

Break down barriers and create opportunities for cross-fertilization between 

narrow and arbitrarily defined disability sectors. While groups may differ

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 

13 
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 

differen enc

Health Resour Human 

Services. In pa

health program

also notes that

does not admin

advantage in r

potential conce ight draw on resources of an 

entitlem

Research R

A. fine critical terms in research 

ly

uld

ual

t ag ies. After exploring the options, NCD recommends assigning the role to the 

ces and Services Administration (HRSA) in the Department of Health and

rt, that choice reflects the agency’s experience in looking broadly at the impact of 

s and policies on the overall well-being of other vulnerable populations. NCD

although HRSA plays a central role in targeted health care improvement efforts, it

ister any of the major health care entitlement programs. NCD views that as an 

elation to the coordination of health and disability services, since it reduces 

rns about conflict of interest on initiatives that m

ent program to reduce overall system costs.

ecommendations

Create a national stakeholder group to de

on consumer-directed and -oriented care, at least for purposes of federal

funded research. Such terms as “consumer-oriented,” “consumer-directed,”

“disability,” “satisfaction,” “personal care assistance,” and “choice” sho

be defined, making it possible for researchers to tailor studies to particular 

interventions while promoting comparability across and clarity within individ

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 

14 
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. 

clude measures of quality of life among outcomes studied in program 

evaluation. Satisfaction with services may not capture the full impact of 

D. In

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 consumerdirected 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 treatme

this is a critical gap in current knowledge. 

F. Include individuals with primary mental health diagnoses in evaluation 

nt, 

studies. We found not a single study that looked at the impact of consumerdirected 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 

15 
missions, research efforts, and staffing, is that this role be assigned to the Office of the Assistant 

Secretary for Planning and Evaluation (ASPE) w ent of Health and Human 

Services. 

n

the role of government from oversight of tightly defined program options to a broader 

respon ility

development o s

on an ongoing basis across disability groups and age categories, that resources are directed to 

fill gap the

consumer-defi ins that include not only direct satisfaction with services 

but also ualit

ithin the Departm

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 i

sib for ensuring that a set of definitions and protocols are available to support the 

f a knowledge base in this area, that those tools are used to assess consumer need

s in service continuum, and that programs meet rigorous evaluation standards for 

ned outcomes in doma

q y of life, health, mental health, and function. 

16 
II. 

Introduction 

practices, as well as the factors that facilitate or impede their implementation. It presumes that 

es. 

B. Methods

es of

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 

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

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 disabiliti

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 phas

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 

17 
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, 

-funded reports, and Web site documents. Web sources included Medline, PubMed, 

es 

et

to

permit meaningful integration of findings across studies. Three of these topics—consumer 

irected services, outcomes of consumer-directed care, and the cost-

,

f

models 

s

foundation

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 outcom

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 me

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

preference for consumer-d

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 o

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

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 factor

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. 

18 
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 

The terms “consumer-directed care” and “consumer-oriented care” have different meanings. 

onsumer-directed care” has its roots in the independent living movement and is 

upport

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 w t ser ts 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 appli le ac h the language used to capture the 

concep aries y 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 d abilit t to note that “consumer-directed,” as 

used in is rep industry use of the terms 

“consu en” to refer to private health insurance characterized 

by high deductibles and low premiums.

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 term “c

most commonly used in reference to home- and community-based long-term care and s

ha vices would best meet those needs. It also reflec

cab ross the spectrum of disability, althoug

t v among disabilit

is y and for any age group. It is importan

th ort, should not be confused with the current insurance

mer-directed” and “consumer-driv

19 
Consum r-ori

“Consu on 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 

cted” by professionals or by provider/consumer partnerships 

with

ery

In practice, the line between consumer-directed and consumer-oriented care is not precise. Some

system om of both.

It is less impor ences as

research is carried out so that

as the basis for d

Outcomes 

Outcom

• al ability

• 

• Consumer participation and education 

e ented Care

mer-oriented care” has a broader definiti

care delivery systems that are “dire

but seek to ensure that decisionmaking is responsive to the needs and concerns of people

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 deliv

of care in the least restrictive setting (Ireys et al., 2002). 

s lie s ewhere between the two and some are designed to incorporate elements

tant to make a precise distinction between the two than to recognize differ

 real differences among models of care are identified and analyzed 

eeper understanding. 

es were defined by the research team in collaboration with the CAB to include

• Consumer satisfaction 

Changes in health status and function

• Consumer control 

Consumer choice 

• Quality of life

• Self-esteem 

• Employment and continuity of work 

• Changes in emergency room and hospital utilization 

• Changes in homelessness 

20 
• Provider sensitivity and cultural competence 

• Cost-effectiveness 

D. Overview of Report 

This report assesses the extent and types of knowledge about federal and state consumerdirected 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 consumeroriented 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. 

21 
22 
III. 

Legal and Regulatory Framework 

for Consumer Direction

Equal rights, access to care, adequate health care coverage, and the option to obtain services in 

re 

in turn

provided critical language for the Supreme Court Olmstead decision of 1999, which required 

ting

ts 

-

pand

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 

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 mo

positive requirement for the “most integrated” services (ADA Web site, 2003). The ADA

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 exis

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 roo

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 ex

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 (

23 
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 A 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, 

,

7

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 

mer-directed or -oriented health care. 

h

ren with Special Health Care Needs programs to provide 

services, technical assistance, and support for children with disabilities and their families. 

Finally ppor ough

amendm nts to iver

Suppor rogra 2003, and the Family and Medical 

Leave Act in 1993. 

ct (TWWIIA) of 1999, allow states to provide

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 199

permitted states to cover habilitation services in residential and day settings, removing 

institutionalization as a requirement for coverage of habilitation services. Finally, Section 1115 

important vehicle for testing new models of consu

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, whic

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 Child

, su t for the care provided by informal family caregivers is offered thr

e the Older Americans Act of 1965, including the National Family Careg

t P m in 2000, the Lifespan Respite Care Act of

24 
IV. 

Program and Policy Trends 

A. Introduction

Current initiatives that incorporate aspects of consumer direction or consumer orientation inclu

different kinds of interventions, target different populations, and emphasize different goals

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 ca

de

and

re; 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). 

cies, and out-of-pocket

expenditures by consumers and their families. The Medicaid program is the largest public funder 

,

r

• The optional Medicaid state plan benefit for personal assistance; 

Services (HCBS) Waivers; and 

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 agen

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 fo

people with disabilities: 

• 1915(c) Home and Community-Based 

• 1115 Research and Demonstration Waivers. 

25 
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 perm

-

itting 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 

not seem

y

ave

ily and other informal caregivers of individuals with disabilities—

services that are rarely covered by either Medicaid or Medicare. 

 unpaid family caregivers (Gibson et al., 2003). 

Another analyst estimated the total value of national spending on informal and unpaid care to 

ve

).

re 

(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

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 publicl

funded services and what people can afford to buy on their own. Recent federal initiatives h

expanded support for fam

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 longterm support services relied exclusively on informal caregivers, which implies out-of-pocket 

payment and/or loss of income on the part of

be approximately $196 billion (1997 dollars), while nursing home care was estimated to ha

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 Medica

program, for example, started as insurance coverage for older Americans, but within its first 

26 
decade, people with disabilities became eligible for coverage under certain conditions. Sever

mechanisms have been used t

al

o expand Medicaid eligibility for people with disabilities: HCBS 

Waiver Programs, 1115 Waiver Programs, SCHIP, and Medicaid buy-in programs. As a result, 

increased steadily, o 8.6 million in the seven years from 1995 to 2003 (CMS 

3).

me HCBS Waiver Programs, Medicaid i rules ar ed to exp

for community-based services to indivi isabilities w et the functional 

institutional care in nursing h or me 1115 Research and 

n Waiver Programs have ex ed ility for pe le with disabilities 

the income cutoff for eligibilit ex are, the Oregon Health Plan, and 

alth used savings g erated by ma ating lment in managed care plans to finance 

coverage of new beneficiary groups. Three other states have obtained 111 off

id to low-income individuals living ith H like AIDS t conside

ty and therefore d t ensure M aid ugh the Med aid-SSI

eb site, 2004). 

eated by the BBA extended insu nce e to many uninsure children

hose fam y f dicaid. According to the Am n Academ

ics (AAP), the nu f children receiving Medicaid and/or SCHIP coverage increased 

n in 20 million 02 rt, 2002). So these chi

l health c bilitie

uy-In program ich all uld otherwis ed incom

standards to purc se Medicaid verage as their sole coverage or to supplement 

Twenty-six states had implemented Medicaid Buy-In programs as of September 2003, and 

d programs or authorizing legislation pending (Jensen, 2003). Ironically, 

the number of people with disabilities under the age of 65 who receive Medicaid benefits has 

from 6.5 million t

Web site, 200

Under so ncome and asset e relax and

eligibility duals with d ho me

criteria for omes ICFs/MR. So

Demonstratio pand Medicaid eligib op

by raising y. For ample, TennC

MassHe en nd enrol

5 Waivers to er 

Medica w IV, which, un , is no red a

disabili oes no edic coverage thro ic link.

(SHFO W

SCHIP, cr , ra coverag d (and some

parents) w ilies did not qualif or Me erica y of

Pediatr mber o

from 15.2 millio 00 to 18.6 in 20 (AAP Repo me of ldren

had specia are needs or disa s.

Medicaid B s, wh ow individuals who wo e exce e

eligibility ha co

their private insurance, are another means of expanding eligibility for people with disabilities.

another nine states ha

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 

27 
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 

State Name 

Medicaid Buy-In 

(year implemented) TWWIIA* State Name 

Medicaid Buy-In

(year implemented) TWWIIA*

Alabama Infra Nebraska 1999 Infra

Alaska 1999 Infra Nevada Infra 

Arizona 2003 New Hampshire 2002 Infra

Arkansas 2001 New Jersey 2001 Infra 

California 2000 Infra New Mexico 2001 Infra

Colorado Study stage only New York 2003 Infra 

Connecticut 2000 Infra North Carolina 

Delaware Infra North Dakota Planned for 2003 Infra

Florida Ohio 

Georgia Oklahoma Study stage only Infra 

Hawaii Oregon 1999 Infra 

Idaho Pennsylvania 2002 Infra 

Illinois 2002 Infra Rhode Island Demo/infra

Indiana 2002 Infra South Carolina 2000 

Iowa 2000 Infra South Dakota Infra 

Kansas 2002 Infra Tennessee 

Kentucky Texas Demo/infra

Louisiana Planned for 2004 Infra Utah 2001 Infra 

Maine 1999 Infra Vermont 2000 Infra

Maryland Planned for 2005 Infra Virginia Study stage only Infra 

Massachusetts Pre-1999 Infra Washington 2002 Infra

Michigan Planned for 2004 Washington DC Demo/infra

Minnesota 1999 Infra West Virginia 2003 Infra

Mississippi 2000 Demo/infra Wisconsin 2000 Infra 

Missouri 2002 Infra Wyoming 2002 Infra

Montana 

* “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 

28 
slowed or even reversed in recent years due to the dwindling of matching state funds once used

to expand coverage. 

Home and Com s C S h e e

the range of com r e

BS grams were lim d by the e’s capacity for institutional care—in other 

number of people enroll in th aiver could not exceed the capacity of nursing 

r ICFs/M t cc t t . However, since the early 1990s, federal regulations have 

ates to ro e B o di du o m t i tit n a r eri re ardless o

ty of in t n a ep ne p nts Thu , b wee 19 a d 2 02 C S W iver 

for peo th ve m n d bili es grew more than 500 percent (Lakin and 

a Medicaid HCBS Waiver

for peop w d el ental disabilities or mental retardation (Doty, 2000). These 

extend s a e nt, personal care assistance, adult day programs, habilitation 

, and respite care pe le ho o o erw e r ide n I s/ R.

bruary 20 2 e e 26 a e CB Wa er wi all but one state having at least 

CBS Waive ( S eb site var wi ta to tate nd

buted un ve a s at a W iver target popula ns e Y a d alif ia

unt for 28 percent of the increase in H BS rti ipan s, a fi e s tes M nes a,

akota, S h ak , V m nt, nd yoming) have twice the national average of HCBS 

per 10 0 it ns h f s tes llino s, Indiana, Kentucky, Mississippi, and 

mb

he de nd for HCBS continues to grow, further expansion m y b li ed by s te

rtfalls n he qu m nt that states har in e co t of xp nsi n ( ak and

003).

mun

mu

pro

ity

nity

Based

-based

Ser

se

vice

vice

ite

(H

s co

B

vere

) Wai

d by M

stat

vers

edi

hav

caid

e play

for pe

ed t

opl

e m

wi

ajor

th di

rol

sabi

in

litie

xpand

s.

ing

Initially, HC

words, the ed e W

homes o R o a ep hem

allowed st p vid HC S t in vi als wh ee ns utio al c re c it a, g f

the capaci sti utio s to cc t w atie . s et n 92 n 0 , H B a

Programs ple wi de lop e tal isa ti

Prouty, 2003). Approxim tely three-quarters of funds are spent on 

services le ith ev opm

programs ca e m nag me

services to op w w uld th is es i CF M

As of Fe 0 , th re w re 3 ctiv H S iv s, th

one H r CM W , 2003). These programs y dely from s te s a

are distri e nly cro s st es nd a tio . N w ork n C orn

alone acco C pa c t nd v ta ( in ot

North D out D ota er o a W

recipients 0,0 0 c ize , w ile ive ta (I i

Nevada) and the District of Colu ia have less than half the national average (Lakin and Prouty, 

2003). As t ma a e mit ta

revenue sho a d t re ire e s e th s e a o L in

Prouty, 2

29 
Home and Community-Based Waivers/Personal Care Service Under the State Plan1

Adults Children 

State Name 

PCS in state plan 

Elders 

Physical 

Disability 

MR/DD 

Mental Illness 

TBI 

HIV 

Technolo

gically 

Dependent

Blind 

Deaf

Physical 

Disability 

MR/DD 

Mental Illness 

SED 

TBI 

HIV 

Technolo

gically 

Dependent

Blind 

Alabama X X X X X 

Alaska X X X X X 

Arizona X 

Arkansas X X X X X 

California X X X X X 

Colorado X X X X X X X X X X 

Connecticut X X X X 

Delaware X X X X X X 

Florida X X C X X 

Georgia X X X X X 

Hawaii X X X X X X 

Idaho X X X X X 

Illinois X X X X X X X 

Indiana X X X X X 

Iowa X C X X C X 

Kansas X X X X X X 

Kentucky X X X X X 

Louisiana X X X X 

Maine X X C X 

Maryland X X X X X X X 

Massachusetts C X X X 

Michigan X X X X X 

Minnesota X X X C X X X 

Mississippi X X C X 

Missouri X X X X X X 

Montana X X X X X X X 

Nebraska X X X X X X X 

Nevada X X X X X X X 

New Hampshire X X X X X X 

 1

For states marked C, there is some mention of co

Waiver description. In a couple of cases, the Waiver is still pen

nsumer-directed or consumer-oriented services in CMS’s 

ding. 

30 
Adults Children 

State Name 

PCS in state plan 

Elders 

Physical 

Disability 

MR/DD 

Mental Illness 

TBI 

HIV 

Technolo

gically 

Dependent

Blind 

Deaf

Physical 

Disability 

MR/DD 

Mental Illness 

SED 

TBI 

HIV 

Technolo

gically 

Dependent

Blin

d

New Jersey X X X X X X X X X X X 

New Mexico X X X X X X 

New York X X X X X X X X 

North Carolina X X X X X X X

North Dakota X X X X 

Ohio X X X X 

Oklahoma X X X X X 

Oregon X X X X X 

Pennsylvania X X X X X X X X 

Rhode Island X X X 

South Carolina X C X X X 

South Dakota X X C X X

Tennessee X X X X 

Texas X X X X X 

Utah X X C X X X 

Vermont X X X X X 

Virginia C C X X X 

Washington X X X X X 

Washington DC X X X X X 

West Virginia X X X X X 

Wisconsin X X X X X X X 

Wyoming X X X X X 

(CMS Web site, 2004) 

It is important to note that personal a stance serv ovided as part of the Medicaid 

n or as part an HCBS Waiver Program, ed cy-directed s vices

onsumer-directed services. So states tha l assistance as a state plan 

ch as Mai and Massachu tts, provide the benefit under a consumer-directed model. 

some HCBS Waiver Programs, such as California’s In-Hom upportive Serv es

, the nation’s largest personal assistance p llow for co umer direction of longterm MS Web site, 2004). 

ssi ices, whether pr

state pla of may be provid as agen er

or as c me t offer persona

benefit, su ne se

Similarly, e S ic

Program rogram, a ns

 support services (C

31 
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

15 Waiv , the state prov d cash allo ould b sed for person care,

ome modifications, respite, and a mul dividua rmined serv s. In

some state-managed care programs that der 1115 W iver authority allow 

nefits such as care coordination, expanded 

substance abuse treatment services, personal assistance, transportation, or home-based care. 

ms 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. 

under an 11 er ide wances that c e u al

therapists, h titude of in lly dete ice

addition, operate un a

managed care plans to provide “value-added” be

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. Progra

State Name PACE 

Medicare / Medicaid 

Integration Program State Name PACE 

Medicare/ Medicaid 

Integration Program 

Alabama Nebraska 

Alaska Nevada 

Arizona New Hampshire X 

Arkansas New Jersey 

California PACE New Mexico pre-PACE 

Colorado PACE X New York PACE X 

Connecticut X North Carolina 

Delaware North Dakota 

Florida X Ohio PACE 

Georgia Oklahoma 

Hawaii pre-PACE Oregon PACE X 

Idaho Pennsylvania pre-PACE 

Illinois pre-PACE Rhode Island X 

Indiana South Carolina PACE 

Iowa South Dakota 

Kansas Tennessee PACE 

Kentucky Texas PACE X 

Louisiana Utah 

Maine X Vermont X 

Maryland PACE Virginia pre-PACE 

Massachusetts PACE X Washington PACE X 

32 
33 

State Name PACE 

Medicare / Medicaid 

Integration Program State Name PACE 

Medicare/ Medicaid

Integration Program

Michigan PACE Washington DC 

Minnesota X West Virginia 

Mississippi Wisconsin PACE X 

Missouri Wyoming 

Montana 

(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

state.

nitiative

ay

X of the Social Security Act, MiCASSA would allow 

Medicaid beneficiaries who are eligible for institutional care to have a choice of receiving that 

pt Web site,

directed

 care nationally still go to nursing homes (Doty, 2000). 

Medicaid Spending on Long Term Care (FY99)

Community

Care

26%

ICF/MR

Nursing 

Home

59%

15%

Again, it is important to note that within this broad picture, there is significant variation by

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 i

proposed to expand community-based services for people with disabilities. Introduced in M

2003 as an amendment to Title XI

care in a community-based setting without an HCBS Waiver (Novak, 2004; Ada

2004). MiCASSA would also allow these beneficiaries the option of choosing consumerlong-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, inclu

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 train

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 institu

ding

ing

tionalization, 

he

problems 

were implemented (Palmer, 2004). Deinstitutionalization, as implemented, was widely 

hospitals to fend for themselves, too often on the street 

(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 t

outpatient services that were supposed to provide that support. In fact, deinstitutionalization

occurred for several decades before supports and other measures to alleviate the

criticized for turning people out of

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 

34 
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 sta

,

te

institutions (Lakin and Prouty, 2003). As ICFs/MR proliferated through the 1970s, pressure 

tes

32-

became 

).

ta, New Mexico, Rhode Island, Vermont, and 

West Virginia have followed suit, and other states are using Waivers and other innovative 

e

The Disability Rights Movement 

nt 

e

increased for further community integration of individuals with mental retardation. Sta

responded with smaller “community ICFs/MR” (4- to 8-bed residences as opposed to 16- to

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

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, Minneso

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 th

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. 

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 moveme

reflected the tenets and strategies of the civil rights movement, with a grassroots call to eliminat

discrimination against people with disabilities and a strong emphasis on self-determination for 

35 
people with disabilities. For many people with disabilities, especially those with physical

disabilities, these goals were most explicitly embodied in the independent living movement. 

iving was founded in Berkeley in 1972; almost 500 

g

odel,”

which views disability as an abnormal state and people with disabilities as abnormal people 

l intervention.

l 

s, and programs. From the 1970s through the present, disability 

activism has provided the impetus for many consumer-oriented and -directed reforms. Family 

advoca were

Medicaid coverage was available to children who were hospitalized for more than one month 

only if their fa

permitted fami ge if they chose to provide hospital-level care for 

their ch at h

a national family advocacy group. One preliminary success of advocacy by Family Voices and 

allies was the i

People 2010 ar 2004;

CDC NCHS Web site, 2004). 

positions

sumerThe first Center for Independent L

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 designin

and implementing service programs than do nondisabled “experts.” Both the theory and 

practice of independent living are counterposed to what advocates term the “medical m

to be “fixed” through medica

Disability activism focused on a range of social reforms that followed directly from the initia

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, service

tes a major force in establishing Katie Beckett Waivers. Prior to this 1981 reform, 

milies were otherwise over income for Medicaid. The Katie Beckett Waivers 

lies to retain Medicaid covera

ild ome. In 1992, parents of children with health care needs founded Family Voices, 

nclusion of medical homes for children with health care needs in the Healthy 

ticulation of health objectives for the nation (Family Voices Web site,

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

for residents of mental health institutions. These are but a few of the most noteworthy con

36 
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 

ire, under a foundation demonstration grant. 

ese

n

d

retary of Planning and Evaluation in the Department of 

Health and Human Services (DHHS), the Centers for Medicare and Medicaid Services (CMS), 

the early 1990s with 38 people in New Hampsh

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, selfdetermination programs have been launched in at least 20 other states. Core features of th

programs include the following: 

• Person-centered planning, enabling individuals and families to define their ow

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 an

accounting matters on behalf of participants (RWJF Web site, 2004). 

Cash and Counseling Demonstration Programs 

In 1996, the Office of the Assistant Sec

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 

37 
community-based personal assistance services and supports under 1115 Waiver authority

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. Prog

models and populations served are different in each state, with some states restricting the selfdirected benefits to personal assistance, and other states including a broader range of serv

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 beg

planning Cash and Counseling programs. 

. Three

.

ram

ices.

in

m

y

ong-

-

r

s by prolonging the

period during which community care is feasible and could reallocate federal dollars for personal 

rsing or institutional care. The literature is ambiguous on this 

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-ter

community-based care for people with disabilities, especially individuals with cognitive 

impairments. State and federal policymakers have strong incentives to support the role of famil

caregivers, as they minimize the effect of systemic fluctuations that might otherwise render l

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 fo

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 saving

choice rather than paying for nu

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

38 
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 

caregivers (Montgomery and Feinberg, 2003). Only family caregivers of older adults (60+) and 

other relatives who are caregivers for children or persons with developmental 

licy

it

es

f

loyed

o not

t

and Feinberg, 2003).

g

e

ent

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

grandparents or

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 po

initiative in this area. FMLA was, in fact, the first federal policy intended to directly benef

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 compani

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 o

the major corporations in the United States offer elder care and child care assistance to emp

caregivers, most often in the form of dependent care spending accounts. These policies d

appear to be a national solution for people who care for relatives with a chronic condition, bu

they are steps in the right direction (Montgomery

Expansion of Managed Care 

Over the past 20 years, managed care has become the framework for the delivery and financin

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 th

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 inher

39 
in MCOs often moves control of an individual’s health care away from the physician/pati

interaction, some managed care systems have built consumer voices into system planning

evaluation. 

The expansion of managed care as a mainstream health delivery stra

ent

and

tegy 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 

mily centered, coordinated, compassionate, and culturally 

effective” (Sia et al., 2002). In a medical home setting, parents (and youth, as children mature 

atricians, and specialists work in partnership to 

identify and ensure access to the services to help children with special health care needs achieve 

parent/provider

relationships. The model emphasizes the critical contribution that parents make to all aspects 

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, fa

and take on self-management of care), pedi

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

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 

40 
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 

e progress has been made in supporting informal 

and family caregivers. 

institutionalization. Relatively few programs offer consumers full autonomy, and these 

n

, and

86,000

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, som

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 

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 directio

have increased sharply over the past decade. In fact, 65 percent of 139 existing consumerdirected home- and community-based service programs have been implemented since 1990

17 percent since 2000 (Doty and Flanagan, 2002). Although the current estimate is that 4

41 
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 freq aced under the direction of co in t els

are personal car e respite care (Dot

f all c r-d gr w to use r fu er

tion, while one in five allows consumers to purchase friendly visitor/companion 

bursable medical services. Near purc iscellaneous 

e or other environmental modifications, special 

, personal ergency nse syst ms, vehicle modifications, home-deliv ed meals,

t liv ng s and Flanag n, 2002). S venty-fou

er-directed programs use intermediary service organizations (ISOs) to assist 

ll checks and taxes, em loye criminal background checks 

The majority of programs impose restrictions on the individuals who can be hired to provide 

 services, usually disallowing legally respons ls (such s spouses, and the 

r guardians of minor children) from being p are (D ty and Flan an, 2002)

ohibiting legall designated representatives of th cognitive impairments from 

selves (Do and Flana n, 2002). There are sever ver. California’s

m allows consumers to hire family members. 

ations most frequently i luded in sum ted HCBS p grams are workinga physical disab lowed y old adults with mental retardation 

or developmental disabilities, people with traumatic bra inally children with 

developm ntal dis oty and Flanagan, 2002). Most programs lim

participation to individuals who have the ability to self-direct (i.e., who have no cognitive 

nts or have parents who provide the direct ognitive 

presentativ willing to assist in directing their ser ices (Doty and 

directed programs, including Consumer-Directed Personal Care and Self-Determination 

initiatives, across the country. 

are most

e, homemak

onsume

uently pl

r/chore servi

irected pro

nsumers

y and Flanag

Waive

hese mod

an, 2002).

nds to cov

ces, and

Nearly half o ams allo consumers

transporta

services or nonreim ly half allow the hase of m

services such as handyman services, hom

equipment em respo e er

adult day health, or training in independen i kills (Doty a e r

percent of consum

participants with payro p e benefits, and

(Doty and Flanagan, 2002). 

support ible individua a

parents o aid to provide c o ag

and pr y consumers wi

hiring them ty ga al exceptions, howe

large In-Home Support Services progra

The popul nc con er-direc ro

ge adults with ilities, fol b er Americans, 

in injuries, and f

physical or e abilities (D it

impairme ion) or require individuals with c

impairments to have re es v

Flanagan, 2002). The following table shows some of the most commonly cited consumer42 
Consumer-Directed Personal Care and Self-Determination State Programs 

Consumer-Directed 

Personal Care 

Consumer-Directed 

Personal Care 

State Name 

Original 

Cash and 

Counseling 

states 

CD PCS 

models 

highlighted 

in the 

literature 

SelfDetermination State Name 

Original 

Cash and 

Counseling 

states 

CD PCS 

models 

highlighted 

in the 

literature 

SelfDetermination

Alabama Nebraska 

Alaska Nevada 

Arizona X New Hampshire X 

Arkansas X New Jersey X 

California IHSS New Mexico

Colorado CD Attendant

Support New York

Connecticut X North Carolina 

Delaware North Dakota

Florida X X Ohio X 

Georgia Oklahoma 

Hawaii X Oregon Independent 

Choices 

X 

Idaho Pennsylvania X 

Illinois Rhode Island

Indiana South Carolina 

Iowa X South Dakota

Kansas X Tennessee 

Kentucky Texas X 

Louisiana Utah X 

Maine Vermont X 

Maryland X Virginia 

Massachusetts X Washington X 

Michigan 

MI Home 

Help X Washington DC

Minnesota 

CD Home

Care—

pending 

X West Virginia 

Mississippi Wisconsin X 

Missouri Wyoming 

Montana 

(Cash and Counseling Web site, 2004; RWJF Web site, 2004; various literature including CMS Web site, 2004) 

43 
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 is ges t re

accommodations by developing and implemen p

e s g e s

move ahead at a inis n e in 

response to the court decision. To encourage an rt lop

restructure their g-te ca st S licit u ategories of Real Choice 

hange s s ce 2001. The overarching emph s of t se g ts to uild

ity-base n integrated sys ms for people with d bilitie including features of 

directe p tic to ow on mers to make decisions

and the a s i hic he rec e them. The chart below illustrates the chronology 

use of r fu s by state (CMS Web site, 2003). 

dec

sure th

ace. T

re sy

ion

at

he A

ems

obli

waitin

dm

, CM

public en

ting com

lists for s

tration an

d suppo

has so

ities to

rehensive plans to provide services in 

rvices

ounce

states

ed m

make

in comm

d the Ne

’ deve

ltiple c

ason

uni

w F

men

able

ty-bas

reedom

t of p

less restrictiv ettin

rea

lon

gs

son

and en

able p

rm

ed s

 In

lans

etting

itiativ

to

Systems C Grant in asi he ran is b

commun d a d te isa s,

consumer- d rac es all c su about the types of services 

they want w y n w h t y eiv

and varied g ant nd

44 
Olmstead and Real Choice Systems Change Grants 

State Name 

Olmstea

d Planning Gra

nts 

FY 2001 gra

nts 

2

0

0

3: QA/Improvement in 

H

C

B

S

2

0

0

3: Mone

y Follows the 

P

ers

o

n

2003: Independence Plus 

2

0

0

3: Community-Integr

ated 

P

A

S

2003: National State-to-State 

Tech Assistance Progr

a

m

for Community Living 

2

0

0

3: Family-to-Fa

mily HC 

Info and Ed Centers 

2003: Community-Based 

Treatment Alternative

s for 

C

hildre

n

2003: Respite for Kids 

2

0

0

3: Technical Assistance 

for C

onsu

mer Task Forces 

2003: Respite for Adults 

2003 and 2004: Aging and 

Disability Resource Centers 

Alabama X X X 

Alaska X X X 

Arizona X 

Arkansas X X X 

California X X X X 

Colorado X X X X 

Connecticut X X X X 

Delaware X X 

Florida X X X 

Georgia X X X X X 

Hawaii X 

Idaho X X X 

Illinois X X X 

Indiana X X X X 

Iowa X X 

Kansas X 

Kentucky X X 

Louisiana X X X 

Maine X X X X X X 

Maryland X X X X X X 

Massachusetts X X X X X 

Michigan X X X X 

Minnesota X X X 

Mississippi X 

Missouri X X X X 

Montana X X X X 

Nebraska X X 

Nevada X X X 

New Hampshire X X 

New Jersey X X X X 

45 
State Name 

Olmstea

d Planning Gra

nts 

FY 2001 gra

nts 

2003: QA/Improvement in 

HCBS 

2003: Mone

y Follows the 

Person 

2003: Independence Plus 

2003: Community-Integr

ated 

PAS 

2003: National State-to-State 

Tech Assistance Progr

a

m

for Community Living 

2003: Family-to-Fa

mily HC 

Info and Ed Centers 

2003: Community-Based 

Treatment Alternative

s for 

Children 

2003: Respite for Kids 

2003: Technical Assistance 

for Consu

mer Task Forces 

2003: Respite for Adults 

2003 and 2004: Aging and 

Disability Resource Centers 

New Mexico X 

New York X X 

North Carolina X X X 

North Dakota 

Ohio X X X 

Oklahoma X 

Oregon X X X X 

Pennsylvania X X X 

Rhode Island X X X X 

South Carolina X X X 

South Dakota X 

Tennessee X X 

Texas X X X X X 

Utah X 

Vermont 

Virginia X X 

Washington X X 

Washington DC 

West Virginia X X X 

Wisconsin X X X X X 

Wyoming 

(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: 

46 
• 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 

Consumer Involvement in Research

re means that individuals with disabilities have choices, 

ups

still

nd

n evaluation used consumer focus groups to identify domains for its 

research, and some organizations such as the National Institutes of Health, National Cancer 

s.

f

K-AIM),

d

• 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. 

The expansion of consumer-directed ca

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 gro

informed the development of some of the evaluation measures, but the evaluation process is

largely the jurisdiction of researchers. Toward the inclusive end of this continuum, the Cash a

Counseling Demonstratio

Institute, and Department of Defense have involved consumers in setting their research agenda

Key informants identified three organizations as doing a particularly good job in the area o

consumer involvement in research: Advocates Involved in Monitoring in Oklahoma (O

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 administere

by trained interviewers with developmental disabilities (DDA of MD Web site, 2004). Family 

47 
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 tha

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 inequalitie

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 spe

of disability, CAB members identified communication as a key area of concern for consumeroriented and consumer-directed care. We found

t

s

ctrum

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-toconsumer 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 

48 
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.

49 
50 
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: 

1. Does preference for consumer-directed health care vary by the nature of the 

umer or for paid or 

unpaid caregivers, in the following areas? 

• Quality of care 

The CAB identified other potential outcomes of consumer-directed care, such as employment 

f

es

re

.

ies, and some also included 

elders. Only one study addressed outcomes for children, all of whom were adolescents. 

disability, age, or other demographic, geographic, or socioeconomic factors?

2. Does consumer-directed health care lead to different outcomes for consumers,

including changes in satisfaction with care, either for the cons

• Empowerment or control 

• Community integration 

• Extent of unmet needs 

• Health status

• Consumer safety 

3. Is consumer-directed or -oriented health care cost-effective or cost neutral?

and care in the least restrictive environment, but they were not addressed in any of the studies o

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 studi

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 we

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 disabilit

51 
In order to rationalize the review of findings, we established study inclusion and exclus

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 prevente

even exploratory analyses of outcomes across the different age groups or disability type

ion

d

s.

Thus, our relatively inclusive selection criteria were as follows: 

 criteria. However, we 

also reference findings from a second set of studies that were either conducted on convenience 

support. Seven studies were identified that address this topic directly. Six of them met our 

ty populations that were not examined 

in any of the other studies. Below is a brief synopsis of each study. 

• 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

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 

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 minori

52 
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.

participated for a 48 percent 

response rate. Both older and younger adults were included in the study. 

pondents 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 

8, 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 

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 homeand community-based Waiver services, and what their information and counseling needs might 

be. The study used a random sample design; 743 individuals

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, res

to participate in the study. One hundred sixty-eight responded for an 81 percent response rate. 

The Mahoney et al., 199

53 
of the Cash and Counseling Demonstration. Questions were similar to those posed in the 

Desmond et al., 2001, and Mahoney et al., 1998,

r in that all resp n r come icaid ts w biliti w

a random sample design, with 491 people in the sample for a 34 percent response rate. Both 

older and younger adults were

The second study, Simon-Rusinowitz et al., 2001 lorida as part of the Cash 

and Counseling needs assessment among adult developmental disabilities who received 

CBS Wa r s. A ies wed

surrogate responses, in this study 74 percent of respondents were surrogates, whereas in the other 

studies, surrogates represented a minority of s. This study involved a random sample 

 participants, for a 54 percent response rate. 

ilar to or different from the other clients served by the home care 

 

studies, and the population surveyed was 

simila onde ts we e low-in Med recipien ith disa es. It as

 included in the study. 

, was conducted in F

s with

Medicaid H iver se vice lthough all of the Cash and Counseling stud allo for

respondent

of 387 program

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 sim

agencies. 

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. 

2

Equal representation of 200 respondents was achieved among white, African-American, and Chinese 

individuals; however, only 131 Latinos participated in the study.

54 
An Overview of the Seven Research Studies 

l

Study Year 

Sample 

Size Location

Recruitment 

Base 

Sampling 

Method 

Research 

Design

Response 

Rate 

Actua

Choice

Gibson et al. 2003 1102 Nat’l. UNK UNK Cross Sectional 32 percent N 

Desmond et al. 2001 743 Florida Personal care 

clients Random Cross Sectional 48 percent N 

Feinberg and Whitlatch 1998 168 CA 

Family caregivers 

who used in-home 

respite care

Universe Cross Sectional 81 percent Y

Mahoney et al. 1998 493 New York Personal care 

clients Random Cross Sectional 23 percent N 

Sciegaj et al. In press 731 Boston using services to

assist with ADL 

Convenience Cross Sectional N/A N 

Clients of CBOs 

Simon-Rusinowitz et al. 1997 491 Arkansas Medicaid personal 

care clients Random Cross Sectional 34 percent N 

Simon-Rusinowitz et al. 2001 378 Florida HCBS Waiver 

clients Random Cross Sectional 53 percent N 

All of the studies included individuals over the age of 65, and most included individuals wit

disabilities under the age of 65. Most of the studies included individuals with physical 

disabilities; one was conducted exclusively among individuals with developmental disa

and another explicitly mentioned the inclusion of individuals with cognitive disabilities. Fiv

of the studi

h

bilities,

e

es permitted surrogate responders, and the family caregiver study targeted family 

members caring for people with cognitive disabilities. Of note, none of the studies explicitly 

tric disabilities or families of children with special health 

s

cent)

),

ed

included individuals with psychia

care needs. 

Findings on consumer interest in self-directed services varied widely across the studies. It wa

highest among the national sample of individuals with disabilities over the age of 50 (78 per

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 express

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. 

55 
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 

nsumers. In addition, surrogate respondents for people with 

ection

,

.

fer consumer 

direction. 

nce were the Gibson et al., 2003, 

smond et al., 2001, Florida study. One of the 

all representation of racial or ethnic minorities in 

n

tudy

for

se

eption

a preference for the agencyfor self-direction than for older co

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 dir

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 pre

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 differe

national study conducted for AARP and the De

limitations of the AARP study was the sm

the sample. However, the Desmond et al., 2001, study was similar in design to three studies i

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, s

of older adults in Boston found that Chinese elders were more likely to express preference

consumer direction and Latinos were more likely to express preference for a traditional ca

management model (compared with African Americans or whites). However, with the exc

of Chinese elders, the vast majority of study respondents expressed

56 
directed model of care. In most of these studies, the association between race or ethnicity

preference remained significant in multivariate analyses. 

Nature or Severity of Disability 

None of the studies specifically examined differences in preference among individuals w

different types of disabilities. The two studies that examined preferences among surrogate 

respondents caring for adults with cognitive disabilities, however, reported preference rate

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 

and

ith

s

analyzed differences by disability type, and reported preference rates were not broken out by age, 

ons.

lth 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 prefe as stronger among individ e disabilities.

However, in all but one case, the association betwe e t

c ection di ppeared in multivaria analy .

Other Factors 

S d a ot s th t might be associated erd h lud healt status, education level, current service use, 

e me, the availability of family members to provide 

s in general, satisfaction with current services, 

hiring and paying caregivers, the consumer’s prior 

race/ethnicity, or other potentially confounding factors, it is difficult to draw precise conclusi

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 hea

rence w uals with more sever

en sev rity of disabili y and preference for

onsumer dir sa te sis

ome studies looke t her factor a with preference for consum

irected services. T ese factors inc ed h

wheth r or not the individual lived at ho

care, the availability of informal caregiver

the consumer’s prior experience with

experience with managing and supervising caregivers, and the consumer’s willingness to 

assume responsibility for caregiver management at various levels. 

57 
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

an informal caregiver (not necessarily a family member) available was a predictor of preferenc

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 stu

having

e

dies 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. 

, 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 sup visio abilities

for consumer-d ated

with consumer preference for self-direction across the studies. 

Factors Assoc

In summary

er n make a clear or major difference in the preference of individuals with dis

irected care. The table below provides an overall summary of factors associ

iated with Consumer Preference for Self-Direction

Interest in 

Consumer 

Direction Interest Associated With

Study Yes Education

Not 

Sure Age Gender 

Race/

Ethnicity

Family

status 

Inform. 

Caregiver

Prior 

Experience 

Severity

of 

Disability

Service

Use

Desmond et al. 59% 20% Y N N N Y Y Y Y N

Feinberg and Whitlatch 69% N N Y N N

Gibson et al. 78% N N 

Mahoney et al. 40% 22% Y Y Y Y Y Y N N

Sciegaj et al. 30% Y 

Simon-Rusinowitz et al. 29% 26% Y Y Y N N Y 

Simon-Rusinowitz et al. Cons 44% 27% Y Y N 

Simon-Rusinowitz et al. Surr. 38% 29% Y Y 

Note: Y = Stati

N = No s

Thus, the current research on preference for consumer direction provides conflicting results, 

perhaps due to differences in study m

is the possibility that peop

stically significant association 

tatistically significant association 

Blank cell = Not studied or reported 

ethods or the phrasing of questions. Furthermore, there 

le who are asked to make a hypothetical choice would respond 

58 
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 

e very different studies seemed to point in similar 

directions: 

, but that difference did not alter the fact that a 

ople over the age of 65 expressed a preference for 

 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 

s

 care. 

• Education level rarely makes a difference in preference for consumer-directed 

d care.

minorities in the sample. 

Even with these limitations, in some areas thes

• Preference differed by age

substantial number of pe

consumer-directed care. 

• Among all populations, a continuum

not consistent. Studies in different parts of the country indicated different level

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. 

• In some groups, the existence of informal caregivers or family members who 

could serve as caregivers was related to a preference for consumer-directe

59 
As a final note, it should be emphasized once again that the literature was silent on the issue

the preference of families of children with special health care needs or mental health c

of

onsumers 

for consumer-directed care. In fact, among the populations included in these studies, the issue of 

ed

es

rs

ade 

 care 

nce

potential psychiatric comorbid conditions and their impact on preference for consumer-direct

care was never addressed. 

B. Does Consumer-Directed Health Care Lead to Different Outcom

for Consumers? 

Outcomes considered included the following: 

• Satisfaction with care—for the consumer and the paid or unpaid caregive

• Empowerment or control 

• Extent of unmet needs 

• Health status

• Quality of care 

• Safety 

These questions are extremely important to policymakers and consumers, because consumerdirected 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 m

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

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 convenie

samples or inconsistent research methods. However, they provided information about a 

60 
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 

re

conducted by Benjamin et al., who researched Medicaid SSI 

participants in California’s In-Home Supported Services Program. Each county that participated 

l

ne form of service delivery over another—this 

choice was made by county caseworkers following an assessment. Consumers who were 

er.

ing

r those

ceived agency-directed 

services, stratified by age group. The Benjamin et al., 1999, study examined outcomes for the 

fferent

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 we

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

in the study offered a consumer-directed option for in-home support services, including persona

assistance. Some of the counties also offered an agency-directed program. It is important to note

that consumers were not allowed to choose o

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 provid

The consumer-directed option provided very little assistance to consumers who needed train

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 (selfdirection 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 fo

who received consumer-directed services with outcomes for those who re

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 di

61 
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 

er age. 

The Doty et al., 1996, study was an anal from a Lou Associate

, a M ai

programs. Michigan offered a consumer rm care pr s offered a

directed long-term , an ary d off model in which consumers ld

their own attendants, but county nurses ervised ca was condu

using in-home inte s, stud ubje competent to b d is

compared outcomes for program es ree states, s e level of

consumer-directed care. 

The Feinberg and Whitlatch, 1998, study of family caregivers, described above, c ed the

or thos u ons er mil

ho used agency-directed in-home respite. 

es

s

l intermediary to pay their 

caregivers. Each individual was interviewed at two points, once upon enrolling in the program

lment. A total of 1,739 individuals participated in both interviews, 

based on consum

ysis of findings is Harris and

nd Michigan

s

survey of elderly personal care recipients in the Maryland, Texas edic d

-directed long-te

ered a hybrid

ogram, Texa gencycare d M lan cou hire

oversaw and sup

cts had to be

re. The study

e interviewe

cted

rview but y s . Th study 

enrolle across the th tratified by th

ompar

outcomes f e who sed c um -directed in-home respite with the outcomes of fa ies

w

The Foster et al., 2003, study was conducted among adults of all ages with physical disabiliti

who were eligible for Medicaid personal assistance services in Arkansas. These individual

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 fisca

and nine months after enrol

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. 

62 
Basic Features of the Outcome Studies 

Sample 

Study Year Size Location Recruitment Base 

Sampling 

Method Research Design

Response 

Rate 

Response 

Bias 

Beatty et al. 1998 92 VA personal assistance 

through the state

Universe Longitudinal with

comparison group 

UNK Don’

People receiving paid 

t know

Benjamin and 

Matthias 2001 511 CA 

Recipients of CD inhome supportive 

services 

Random 

Cross sectional 

with comparison 

group 

78% more

res

Younger, 

minorities 

 likely to 

pond

Benjamin et al. 2000 1095 CA 

Recipients of CD inhome supportive 

services 

Random 

Cross sectional 

with comparison 

group 

78% 

Yo

minor

more

res

unger, 

ities 

 likely to 

pond

Benjamin et al. 1999 511 CA 

Recipients of CD inhome supportive 

services 

Random 

Cross sectional 

with comparison 

group 

78% 

Yo

minor

unger, 

ities 

more likely to 

respond 

Doty et al. 1996 879 MD, MI, recipients of personal and TX 

Older Medicaid 

care services 

UNK 

Cross sectional 

with comparison 

groups 

88% UNK 

Feinberg and 

Whitlatch 1998 168 CA 

Family caregivers who 

used in-home respite 

care

Universe Cross sectional 81% UNK

Foster et al. 2003 1739 AK 

People enrolled in AK 

C&C Program, 9 mos. 

after enrollment 

Universe 

Randomized, 

control study, preand post 

89% tx

grp, 85% 

control 

group 

UNK

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 individua

with cognitive disabilities. None of the studies addressed consumer-directed care for individual

with psychiatric disabilities or families of children with disabilities.

ls

s

er-directed services were significantly more satisfied with their overall 

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 consum

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

63 
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 

usekeeping needs were met. A few of the studies also included 

5 and

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 

here

h

mermembers were older and more likely to be Hispanic or Asian than those who hired nonfamily 

the way personal care and ho

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 6

older and those

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 t

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 wit

their services than the younger group. However, over time, younger enrollees in consu

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 

64 
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, 

ers 

dies examined differences between those who received consumer-directed care 

atty et

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 

oty et

no

ciated

employment, scheduling and firing the aide, and making sure the aide did the job he or she is 

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, research

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 stu

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. Be

al., 1998,

caregivers and the authority to direct their care than those who received agency services. D

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

indicators of consumer direction. In logistic regression, the two most important factors asso

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 

65 
supposed to do. In multivariate analysis, family caregivers who scored higher on this index

more likely to have selected consumer-directed services than agency-directed services, and were

were

also more satisfied with the care they obtained for their relative. 

rs,

ent to 

examine differences between individuals who hired family members and those who hired 

ily members. In multivariate analysis, they found that individuals who hired nonrelatives 

t 

with

IADLs. 

-

up had significantly higher impairment, as measured by baseline ADL 

needs, than the agency-directed group. Foster et al., 2003, found that individuals receiving 

eeds

agency services. In the study that compared older and younger consumerBenjamin 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 worke

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 empowerm

nonfam

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 unme

needs that were examined in these studies were assistance with ADLs and assistance

In multivariate analysis, Benjamin et al., 2000, found that individuals receiving consumerdirected 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 gro

consumer-directed services had significantly fewer unmet ADL, IADL, and transportation n

than those receiving

66 
directed care recipients, Benjamin and Matthias, 2001, found that younger people reported 

unmet IA e d e ds.

ealt tus

dy e e. Foster et al., 2003 und no signi nt diffe nce in

vera lth st s between th ho received consum ices and 

those who received agency-directed services. However, over a nine-month period, there were 

all improvements in important health outcomes for individuals in the consumer-directed 

nd less shortness of breath than people in the 

gency reported fewer muscle contractures. Although these 

prov ignificant, they were very important clinically. 

,

falls, or health problems that might indicate inferior treatment. The 

Benjamin et al., 2000, study defined safety in terms of provider behaviors (yelling, threatening, 

g

The table below summarizes the outcomes found to be associated with consumer direction 

higher DL n eds than ol er people, but there was no differenc in unmet ADL nee

Change in H h Sta

Only one stu xamined this outcom , fo fica re

changes in o ll hea atu ose w er-directed serv

some sm

program. Younger people reported fewer bedsores a

a -directed program, and older people

im ements were not statistically s

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,

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 receivin

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. 

across the studies. 

67 
Outcomes Associated with Consumer Direction 

Study Year Satisfaction Empowerment/ Control Unmet Need Health Safety Quality of Life 

Beatty et al. 1998 Y Y N 

Benjamin and 

Matthias 2001 Y Y Y 

Benjamin et al. 2000 Y Y Y

Benjamin et al. 1999 Y Y Y

Doty et al. 1996 Y Y Y

Feinberg and 

Whitlatch 1998 Y Y 

Foster et al. 2003 Y Y N N Y

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, 

not

al

luation

was conducted over approximately one and a half years, during which time 63 program

re 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 pa -Determi

erv emographics of pilot program me and c mparison group differed 

gnificantly by race ethnicity, with the 14-person comparison group having fewer Caucasians 

rv d for tudy w re indivi uals with

but provided outcome information about an important group of individuals with disabilities

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 Region

Developmental Centers in California for people with developmental disabilities. The eva

participants and their families (out of a total of approximately 90) we

rticipate in the Self nation pilots 

completed int iews. D mbers o

si /

and more Latinos and Asians. All of those inte iewe this s e d

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, 

68 
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 postenrollment. 

Conroy et al., 2002 (November), issued an evaluation report to the New Jersey Developmental 

00

ere

aphics. Most of the 

samples were small compared with other studies of consumer direction. In all the states except 

Study Year Size Location Female White Black Latino/a Asian 

Disabilities Council on the implementation of Self-Determination in that state. More than 3

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 w

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 SelfDetermination programs, as they address consumer direction for people with developmental 

disabilities. The table below summarizes study sample sizes and demogr

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 

Sample 

Conroy et al. 2002 77 CA 29% 54% 2% 33% 8% 

Conroy et al. Dec-02 135 MI 45% 86% 

 89 WI 42% 93% 

Conroy et al. Nov-02 138 NJ 49% 91% 

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 measure

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 

d

69 
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, i

Michigan, the greatest gains were in options to hire and fire support personnel, choice of agency 

support personnel, choice of people to liv

n

e 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 

In summary, as with the consumer preference studies, it is difficult to come to definitive 

es point to the fact 

that people who receive consum

more empowered, and experien

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 agencythe 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 SelfDetermination 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. 

conclusions about outcomes because the research covers such diverse populations and asks 

different questions, in different ways. On the other hand, the evidence do

er-directed services are more satisfied with their care, feel 

ce a higher quality of life than individuals who receive agency70 
directed ervic

by virtue of en on a waiting

list for consum

care since they

C. Is Consumer-Directed Health Care Cost-Effective or Cost Neutral? 

lex issues. 

r

el

ked

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 

e

f

it is

. 

We identified nine studies that met our criteria for inclusion that measured cost outcomes. 

s es were individuals who had already expressed an interest in consumer direction, 

rolling in the Cash and Counseling Demonstration or being placed

er-directed care. Perhaps it was no surprise that they were less satisfied with their 

were not yet directing it. 

Examination of the cost-effectiveness of consumer-directed health care raises comp

Different results can emerge depending on the methods that are used to determine costs. Fo

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 mod

has on utilization of the full range of long-term care and supports. A few researchers have loo

even more broadly

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 b

institutionalized absent community care, one could easily document the cost-effectiveness o

community-based services. Absent knowledge of the probability of averted institutional cost,

difficult to document the cost-effectiveness of enhanced community-based care to the system

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. 

71 
• 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 longCare Demonstration, known as Channeling, which served as a prototype for Home- and 

l,

d

d 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 

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. Homeand 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

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 mode

with very limited funding to purchase direct services. The second model expanded services an

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 funde

72 
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 

ing Project, which was one of the six demonstration 

projects included in this meta-analysis. 

al. 9 re e sed aiver services costs with nursing 

fo t ts bled CBS aive Prog

Georgia and California. The sam es ne en olled i the Waive

(1,241 people in Georgia and 2,107 people in Califo ell as comparison groups of people 

living in the community who were no iver. The populations were stratified 

u sed AD IA els, hethe r no the ,

nd enrollment in Waiver or comparison group. Vertrees et al., 1989, conducted a life table 

s.

al.,

e

e 

139 to 6,326, the largest being the Channel

Vertrees et , 198 , compa d hom - and community-ba W

home costs r Medicaid par icipan in the aged and disa H W r rams in 

pl consisted of everyo r n r Programs

rnia) as w

t enrolled in the Wa

into five gro ps ba on L and DL impairment lev w r o t y lived alone

a

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 admission

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 LongTerm 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

1997, used logistic regression to identify risk factors for nursing home placement by merging th

national data on community and nursing home residents and then applied this analysis to th

Arizona Waiver population. 

73 
The table below summarizes the different research studies. 

Results of the Research Studies on Cost 

Disabilities 

Study Year Location 

Sample 

Size Study Population Phy<65 Phy>65 Cog. Sampling Method

Kemper et al. 1986 10 states 6326 Participants in Channeling 

demonstrations x Random 

Kemper et al. 1987 6 programs varied Participants in community

demonstrations X x Random

Vertrees et al. 1989 CA 2107 Home- and CommunityBased Waiver participants X x Universe with 

comparison group

 GA 1241 Home- and CommunityBased Waiver participants X x Universe with 

comparison group

Weissert et al. 1997 

Participants in capitated Compare universe AZ 20361 Medicaid long-term care 

program 

X x to national data 

ith

es at 

trol groups, but those differences were not significant. 

However, in South Carolina, participants in the demonstration program entered nursing homes at 

home use at this time

for

resident, neither of the programs prevented nursing home 

admission for some of their participants. Thus, from a systems perspective, neither program was 

cost neutral. 

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 w

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 hom

the same rate or less often than the con

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

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

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

74 
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 nurs

home costs. In the Arizona Waiver Program, eligibility for home- and community-based servic

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 o

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 mea

that participants in this program would have been highly likely to enter nursing homes withou

home- and community-based s

ing

es

f

nt

t

ervices. This probability changed the cost-effectiveness ratio for 

this particular study. 

g

s most 

er 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 

s experie b r o mes. 

H a o un s to Fs/M or st osts

r People with Mental Retardation and Developmental Disabilities 

ased

In summary, it appears that while the Waiver Programs all cost less per participant than nursin

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 individual

likely to enter nursing homes. On the oth

group ncing ette utco

Comparing ome- nd C mm ity-Based Service Cost IC R In itutional C

fo

Two studies in Minnesota examined differences in cost between home- and community-b

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.

75 
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 s

operated ICFs/MR, while the Waiver sample lived in smaller ICFs/MR o

tater households/group

homes financed by the Waiver Program. There was no significant difference in demographic or 

nd 

community-based program participants. 

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 a

Disabilities 

Study Year Loc. 

Sample 

size Study Population Phy<65 Phy>65 Cog. 

Sampling 

Method 

Hewitt et al. 2000 MN 6548 Institutionalized and HCBS 

Waiver community residents x Universe

Stancliffe and 

Lakin 1998 MN 116 Institutionalized and

residents

community x Comparison 

Group 

Both studies found that the costs of serving people in the community were significantly 

than the co n ple in ncliff o t

l costs p nt hi ty resi

they fou a i l ch ng the vel o mpai ment, predicted 

either staffing patterns nor expenditures. This was important because staff wages and benefits 

ople

nt

programs were less expensive without sacrificing client care. 

lower sts of servi g peo institutions. Sta e and Lakin, 1998, f und tha

institutiona were 36.4 erce gher than communi dence costs. Through regression 

analysis, nd th t ind vidua aracteristics, includi le f i r

n

typically constitute 82 percent of expenditures in institutions or community settings for pe

with mental retardation (Stancliffe and Lakin, 1998). In this study, the direct care staff-to-clie

ratios in the community were higher than in the institutions, suggesting that the community

76 
Hewitt et al., 2000, found that Home- and Community-Based Waiver Program costs/person/ye

were 78

ar

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 

ve 

the

s.

ed

home respite for families who used an agency-directed model. 

t analysis of the Cash and Counseling program

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 cogniti

disabilities who used a direct-pay system for obtaining in-home respite in California, while

second was a large-scale study of the Cash and Counseling Demonstration project in Arkansa

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 compar

with expenses for inDale et al., 2003, conducted a comprehensive cos

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.

Disabilities 

Study Year Loc. 

Sample 

size Study Population Phy<65 Phy>65 Cog. 

Sampling 

Method 

Feinberg and 

Whitlatch 1998 CA 168 Caregivers of adults with disabilities x Universe

Dale et al. 2003 AK 2008 Participants in Cash and 

Counseling demonstration x x Universe

The consumer-directed group received significantly more respite hours per month than the 

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. 

77 
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 

m, 50 nt d ot r any of sistan th o

w 8 ent o Cash nd Co selin pa ts.

12 th pr m, the increased costs for personal assistance amo

uced costs for nursing homes, home

health, and inpatient hospital care. After two years, however, the difference in cost between 

ical

l

Despite research documenting the distress and hardship that informal care creates for the many, 

and additional 

long-term support services—compared with control groups. 

s

progra perce id n eceive the personal as ce that they were au orized t

receive, compared ith only perc f the newly enrolled a un g rticipan

In the first mon s of the ogra ng

demonstration participants was partially offset by red

the treatment and control groups was insignificant. By reducing institutional and acute med

care, the Cash and Counseling demonstration managed to increase the availability of persona

assistance services for both older and younger adults with disabilities without changing the 

overall cost of care. 

Substitution of Formal Care for Informal Care

mostly female, family members who provide this care,3

 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

The second study, Cohen et al., 2000, examined the experiences of informal caregivers of adult

with private long-term care insurance once the long-term care insurance took effect. Samples 

 3

Cohen, Feinberg, and Whitlatch (2002) found the prevalence of depressive symptoms among family caregivers 

was very high in both the agency- and consumer-directed models. 

78 
were derived from eight of the largest long-term care insurance companies in the country,

interviews were conducted with both consumers and caregivers

and

. 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. 

Disabilities 

Study Year Loc. 

Sample 

size Study Population Phy<65 Phy>65 Cog. 

Sampling 

Method 

Kemper et al. 1986 10 states 6326 Participants in Channeling 

demonstrations x Random

Cohen et al. 2000 National 424 Informal caregivers, privately

insured x x Sample*

*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 twothirds 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 consumerdirected services, findings concerning other outcomes were more mixed. Cost-effectiveness of 

79 
consumer direction was particularly hard to d t, except in cases where it is easy to 

demonstrate that the alternative would be institutionalization. 

It is important for poli of quality of

life and the ability of a program to meet client needs. If the Arkansas Cash and Counseling 

ons because more than half of the control group did 

not receive the agency-directed services for which they were authorized, does that make agencyubstitution of

paid for unpaid care, the research shows that the substitution effect is insignificant where it 

benefits are substantial. Thus, here too, minor differences 

ocumen

cymakers to consider cost-effectiveness in the context

dem tration cost more than the alternative

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 s

appears at all, and the quality of life

in cost may be balanced by differences in effectiveness, if the latter is defined to include areas 

in which quality improvements were seen. 

80 
VI. 

Lessons Learned About Implementing

Effective Reforms and Strategies 

e

Key informants repeatedly cited a bias in favor of institutional care in Medicaid regulations and 

fact, individuals with long-term care needs could receive Medicaid 

nal

rm

o

ne

nstrate 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 

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 

A. Barriers to Implementation 

Most of the information discussed below came from key informant interviews conducted in th

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 

program implementation. In

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 perso

care as a state plan service. From 1990 through 2002, the percentage of total Medicaid long-te

care expenditures allocated to community-based services nationally grew from 13 percent t

30 percent (Crisp et al., 2003). That means the allocation of Medicaid funds for communitybased 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 baseli

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 demo

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 hardto-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

81 
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.” 

ample, HCBS Waiver Programs may be targeted to older adults, younger adults 

with physical disabilities, people with developmental disabilities or traumatic brain injury, or 

people th AI

to people acros er a whole series of Waivers, 

or a state plan

varying levels of interest and capacity to self-direct. Several key informants acknowledged 

that CM has t es. 

Labor Supply

The shortage of direct care personnel in the long-term care system is a major issue across the 

: institutional, agency-based, and self-directed. Consumer informants 

l.

With the supply of direct care workers clearly documented as inadequate to meet current 

tion,

Finally, the nature of HCBS Waiver Programs is that they are generally age- or disabilityspecific. For ex

wi DS. Thus, the possibility of offering consumer-directed personal care services 

s the lifespan and spectrum of disability requires eith

amendment that offers a model of personal assistance that can accommodate

S aken some steps to address this institutional bias through a variety of initiativ

and Quality

spectrum of services

related many stories of difficulties encountered in their efforts to find dependable personne

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. 

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 direc

82 
with its capacity to draw consumers’ families and friends into the workforce, as a response based

on expediency, if not principle. 

ses involved in the design and implementation of new 

programs; 

as major barriers to advancingconsumer oriented reforms and consumer-directed services. Consumer informants illustrated this 

ple, a mother of a child insured by Medicaid and 

ople

plemental coverage of services and supports not available through other 

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 expen

• Concerns about the “woodwork” effect when new services are offered; and 

• Gaps in the community long-term care infrastructure that inhibit consumerdirected 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

concern by telling personal stories. For exam

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 pe

with disabilities, serves as a safety net for adults and children with disabilities who buy in to 

Medicaid for sup

83 
insurance. Consumer key informants related the serious psychological impact that any threat or 

ist.

s,

e

iatives for the general population. 

More often, they require higher levels of staffing and other resources, owing to the inherently 

populations.

eople

Unmet Needs—Expected Woodwork Effect 

. 

d

ems to acknowledge the role of 

unpaid family and friends in the provision of care and to provide reimbursement and other 

t costs by maintaining the status quo 

actual reduction of Medicaid coverage has on people for whom alternative options do not ex

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 service

and the challenge that this presents. At a minimum, programs for people with long-term car

needs require the same investment of resources as program init

complex needs of the

The prevailing approach of public and private agencies is to serve the greatest number of p

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. 

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-base

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 syst

supports for that role. As one informant said, “States offse

of unmet need.” 

84 
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 

al

ers

s argue that the consumer-directed movement is taking patients away 

from traditional care settings, such as home health agencies, and thus threatening their viability. 

s

resumed health and 

safety risks of consumer-directed care for all consumers, especially consumers with cognitive 

e

r 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 

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 profession

providers over to the consumer and nontraditional caregivers, including family members and 

friends. Some institutional providers and home care agencies argue that independent caregiv

pose significant safety risks that must be addressed in consumer-directed models. In addition, 

some provider organization

Overall, there is significant resistance and distrust within many traditional provider organization

toward consumer-directed models of care for individuals with disabilities.

Institutional opposition to consumer direction often emerges in terms of p

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 choic

might in fact contribute to higher overall quality of life. 

Consumer and Caregive

85 
available within consumer direction and the associated responsibilities are critical to the 

e

trol over their

health care services and engaging in consumer-directed care, many do not have the information, 

uire

basic

ange of

 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 

rmal 

n and awareness among long-term care 

providers as a barrier to consumer direction and home- and community-based alternatives. One 

ften

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 absenc

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 con

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, req

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

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 r

their options

to know what is possible.” 

Caregivers, often family and friends of consumers who provide care independent of any fo

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 orientatio

key informant described an experience that is common among people with disabilities, who o

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. 

86 
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 resul

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 term

People using the

t,

s. 

se terms assume their applicability to certain groups of disability or age 

categories.

utright debate among key stakeholders, 

including policymakers, program directors, and consumers, about which segments of the 

ities.

thritis, for example, resist identifying themselves as people with 

disabilities and accepting specialized services even if their functional needs are similar to those 

 they would identify as disabled. 

esult of variation among programs in their definitions and disability inclusion criteria, 

research comparing program outcomes is particularly challenging. Policymakers and researchers 

struggl find

informant stated, “The poor definitions, notions, and organization of consumer direction and the 

implicit assum iscussion 

and research o

There is also lack of clarity and, in some cases, o

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 disabil

Many individuals with ar

of individuals whom

As a r

e to commonalities between programs that allow for meaningful analysis. A key 

ption that the notions are antithetical to one another impede intelligent d

n the matter.” 

87 
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 variatio

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 recei

their services will be “taken away” or negatively influenc

n

ving

ed in retribution. One informant stated, 

“In so many instances, people have such limited life experience and such low expectations, they 

r 

f

ilitators.

nted 

are satisfied with programs that can really stink.” It is difficult for programs to identify areas fo

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 o

whom struggle consistently with challenges in this field, were less prompt to identify fac

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 -orie

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. 

88 
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 

appropriate to their individual needs and preferences. Real 

S 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. 

community level to help people make informed decisions 

some

tart-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 

most integrated community setting

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 CM

These programs, which work at the

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

of the age-related barriers to care. 

Foundation Support for Pilots, Demonstrations, S

89 
start-up funding with foundation grants, and ns play an important role in funding 

program evaluations. 

dvocacy and Policy Leadership 

ting

,

erues

st

foundatio

A

Systems change requires leadership, and leadership has been an important factor in promo

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 consum

directed and -oriented care need all the evidence they can muster to address the myriad iss

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 intere

groups or public impressions that impede change.

90 
VII. 

The Role of Federal Agencies in Promoting Research 

g research on consumer-directed and 

and

ves.

nd Rehabilitation Research (NIDRR) 

NIDRR, a branch of the Office of Special Education and Rehabilitative Services (OSERS) at the 

ity

, 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 M tal R

The resource c

support service

the community

consumer-dire

• ice of health plan by people with mobility impairments 

Federal agencies play an important role in promotin

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

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 initiati

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 a

U.S. Department of Education, sponsors demonstration projects and research related to disabil

(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

en etardation and Developmental Disabilities at Syracuse University in New York. 

enter will document innovative policies and practices in the areas of self-directed

s, self-determination, self-advocacy, ownership of a home, and participation in

(NIDRR Web site, 2004). NIDRR has sponsored several small studies of

cted 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 cho

(O’Day et al., 2002); and 

91 
• An evaluation of level of empowerment, consumer contacts with family,

and degree of community integration among deinstitutionalized individuals wit

disabilities (Stancliffe and Lakin, 1998). 

cost,

h

U.S. Departme

DHHS has bro n

citizens, with a eb site, 2004). DHHS 

subdivisions have funded most of the federally sponsored studies of consumer-directed health 

er 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 

ing

• The National Evaluation of the Medicaid Home- and Community-Based Services 

of

1);

• 

nd case management strategies in an effort to 

, 2004);

• erment, 

tus, unmet needs, and caregiver burden in health 

edicare

• An evaluation of the level of control or empowerment, satisfaction, and unmet 

needs in Medicare managed care nursing home residents (Kane et al., 2002); 

nt of Health and Human Services

ad national responsibility for promoting and protecting the health of America

particular focus on vulnerable populations (DHHS W

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 

consum

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 follow

evaluations of consumer-oriented care: 

Waiver Program, which measures the impact of Waiver Programs on quality

life, quality of care, utilization, and cost (DHHS Report 100-97-0019, 200

The evaluation of the Medicare Coordinated Care Demonstration, which 

implements disease management a

improve outcomes for individuals with chronic conditions (CMS Web site

Evaluations of utilization of outpatient services, level of control or empow

satisfaction, change in health sta

care programs for individuals who are dually eligible for Medicaid and M

(Kane et al., 2001, 2003); 

92 
• An evaluation of utilization, satisfaction, cost, quality of life, changes

health status, and feasibility of CMS’s End State Renal Disease managed c

demonstration (Dykstra et al., 2

in

are

002); and

ns, satisfaction, consumer and 

CMS also maintains a repository of Promising Practices in Home- and Community-Based 

studies include the

following: 

f plan, caregiver burden, and caregiver characteristics 

among informal caregivers of elders with disabilities and long-term care 

• An evaluation of PACE that measured utilization of outpatient services, 

hospitalizations and nursing home admissio

caregiver quality of life, and changes in health status, functional status, and

mortality of PACE enrollees (Chatterji et al., 1998). 

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

• 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 o

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); 

93 
• 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 

d 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 

sure that these individuals receive the necessary services 

and supports (ADD Web site, 2004). To our knowledge, ADD has not sponsored research on 

s 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 

• 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), an

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 en

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 ha

94 
(TRIP Web site, 2004; AHRQ Web site, 2004). AHRQ also funded an outcomes study 

), which 

operates within SAMHSA, funded the Consumer-Operated Services Program Multi-Site 

comes of consumer-operated services for people with 

,

n,

t has not yet

produced published results. 

Health Resources and Services Administration (HRSA) has as its mission the improvement of 

any policy reports and case studies related to these topics, there 

were few published outcome studies. 

ng 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. 

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

Research Initiative, which examined the out

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 inclusio

satisfaction with services, costs, and cost-offsets” (BU Web site, 2004). This projec

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 m

Congressional Budget Office (CBO) 

The CBO supports the U.S. Congress by providi

95 
Congressional Research Service (CRS) 

CRS is another support agency to Congress that provides research and analyses on all legislative 

i CRS Web care pol n ten states

b form ms to help Congress make

d s regarding lon et al., 2003). CRS also examined trends in 

institutional care and home- and community-based care for in bilities, as well 

as consumer-direct alth ress Web site, 

2004). These studies are reports of trends in the field rather than outcom

G coun

GAO is the audit, evaluation, and investigative branch of Congress (GAO Web site, 2004). 

ere

ch

ssues ( site, 2004). CRS has looked at long-term icies i to provide

ackground in

ecision

ation and analyses of the different syste

g-term care policies (Walters

informed

dividuals with disa

parity (Penny Hill P

e studies. 

ed care under Medicaid and mental he

overnment Ac tability Office (GAO)

GAO has produced several reports that provide background and trend information on consum

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 insuranc

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 whi

federal agencies are or were involved, the outcomes they have measured, and the context in 

which the outcomes were measured. 

96 
Federal 

Agencies Outcomes Measured Context Study

DHHS; ASPE; 

CMS 

Access to health care; access to 

preventative care; satisfaction of enrollees

Medicaid managed 

care 

Hill and 

Wooldridge, 

2002 

DHHS; NIH; 

NIMH 

Cost, access, and quality of mental health

and substance abuse services

Managed care Varmus, 

1998 

DHHS; CMS;

ASPE; 

Access to care; 

utilization of services; 

medical/behavioral/cognitive and social 

outcomes 

Specialty managed 

care program for 

children with special 

health care needs 

Coulam et 

al., 2000 

DHHS; 

SAMHSA; 

CMHS; CSAT* 

Service utilization; access to mental 

health and substance abuse services; 

cost to consumers and health plans 

Vermont Mental Health 

and Substance Abuse 

Parity Law 

Rosenbach

et al., 2003 

*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 consumerdirected 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.

97 
98 
VIII. 

The policy and programmatic recommendations encourage the expansion or replication of 

ern

,

.

.

gencies, private agencies, foundations,

policymakers, and program managers. 

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. 

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 consum

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 informatio

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 a

99 
A. Core Recommendation 

Consumers, including both individuals with a full range of disabilities and those wh

their care, have the most direct and immediate stake in recommendations for both re

o provide

search and

programs. Informed consumers will most often and most consistently advance the cause of

e 

aimed at consumer groups, foundations that support 

consumer advocacy, and government agencies, is the inclusion of consumers representing 

ge. An inclusive approach would reflect this broad understanding 

of diversity and ensure inclusion of a correspondingly broad range of consumer perspectives. 

l

pecial

ecurity

adequate research in this area and demand programs that are shaped by the best availabl

research findings. 

One overarching recommendation,

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 langua

It would also include youth with disabilities and parents or caregivers of children with specia

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 S

Education and Rehabilitative Services in the Department of Education; and the Social S

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. 

100 
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 

onsibility in the area of health and well-being of individuals 

across the spectrum of disability. 

d

cial 

n with Special Health Care Needs Program in the Maternal 

and Child Health Bureau of the Health Resources and Services Administration), but it does not 

to any

the

n part, this choice reflects the agency’s experience with evaluation and focus 

on vulnerable populations (HIV-infected individuals, low-income families, mothers and 

sumer 

needs. Shortages of trained personnel, inadequacy of accessible housing, and inadequacy of 

interviews. The intent here is not a new clearinghouse or interagency council, but rather a 

focal point for programmatic resp

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 an

reshape programs to fill those needs. Such an entity does exist in relation to children with spe

health care needs (the Title V Childre

exist for adults or elders.

Here again, a reasonable case could be made for adding this central coordinating role

number of existing federal agencies. After considering different options, we would assign

role to HRSA. I

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 con

101 
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 foca

for identification of gaps in services and responsive planning and as a voice for creative 

thinking in these areas. 

l point

newly 

f government.

p

ach of those tasks.

als are both to ensure that programs reflect the needs and preferences of 

d

onsumer oriented or directed. 

The single finding that emerged most firmly across studies was that consumers feel best about 

who

ng

Make response to critical personnel shortages a first order of business for this

identified unit o

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 grou

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 e

Ensure broad consumer representation in program planning and implementation. 

Here again, go

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 an

certainly in programs that are not explicitly defined as c

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

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 havi

choices and having one’s choices listened to is an important variable in and of itself. 

102 
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 

n

ram model. 

as

d not

out

s

d 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 

expect these start-up and transition costs; 

basis as opposed to a smaller number of patients on an inpatient basis. The values placed on this 

arrangements, food, and exercise. Findings suggest that degree of choice should be considered a

important measure of quality in any prog

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,

the intended beneficiaries. The option to participate in a consumer-directed program shoul

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 with

removing critical safeguards that make coverage available to a broad population of individual

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 incurre

treatment of long-hidden problems. It is logical to

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 

103 
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. 

e

d 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, 

that

There are inherent challenges in researching consumer-directed and -oriented care. The concepts 

umer 

e programs 

e often

good

mly assign those 

who do not wish to control their own services to a program that requires them to control their 

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 car

for adults, an

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

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 

themselves are abstract and relative: there is no such thing in the real world as absolute cons

direction, and there are few care models in which the consumer exerts no control. Th

that seek to operationalize these concepts may have limited funding for evaluation and ar

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

design, elimination of bias is challenging. It is clearly impossible to rando

104 
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 studie

explanation of variables in reports on specific projects, and

s, vague

in many cases, study designs that do 

not support credible generalization. This makes it difficult to compare findings across studies or 

hat

he

of

ting 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 

for

Department of Health and Human Services. The broad 

data policy in this arena make it an appropriate locus for the proposed role—to shape and guide 

-oriented care, at least for purposes of federally funded research. 

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 t

have an explicit role in policy, program administration, and evaluation and those that affect t

lives of individuals with disabilities indirectly. A reasonable case can be made for any one

several exis

and research capability, is for this role to be served by the Office of the Assistant Secretary

Planning and Evaluation within the

mandate of this office, its interest and efforts to date in shaping and conducting research and 

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 consumerdirected and

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. 

105 
To that end, a small national work group made up of consumers, researchers, service provide

and government officials should be convened to grapple with term

rs,

s used to characterize 

predictors and outcomes in this field. Such terms as “consumer-oriented,” “consumer-directed,” 

king 

studies to particular interventions while promoting 

l

carce or costly benefits. What this 

recommendation does imply is that rather than choose completely unrelated criteria, benefit 

the collection of baseline data, the identification 

data when proxies are unavoidable, and the identification and use of comparison groups could 

at

to

“disability,” “satisfaction,” “personal care assistance,” and “choice” could be addressed, ma

it possible for researchers to tailor

comparability across and clarity within individual studies. 

The intent of this recommendation is the development of a set of definitions for use by all federa

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 s

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 

of target populations, options for avoiding use of proxy informants, strategies for analysis of 

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 costeffectiveness. Protocols guiding the evaluation of federally funded programs should require th

costs to consumers, as well as costs to government and other institutional payers, be taken in

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 

106 
families as care moves out of institutional and into community settings makes it particularly 

critical that research in this area follow well-defined guidelines.

is

n

ers.

, diverse

consumer representation should be part of all stages of program design, including identification 

at

entation of evaluations, while challenging 

from both logistical and scientific perspectives, could ultimately improve the validity of study 

me 

tive

l

to define

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

subjectively important to different stakeholder groups. Consumers may place different weight o

outcomes in different domains, and their priorities may differ from those of other stakehold

Different consumer groups (e.g., parents of children with special needs as compared with adult 

consumers) may weight outcomes differently. Therefore, when developing protocols

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 th

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 implem

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 outco

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 alterna

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 contro

over those services. The solution proposed was that consumers be involved in a process

107 
quality of life indicators, and that those indicators be included in research to permit more refined

comparison of different models of community-based service.

mes, 

l

ment, which in turn may influence health in the long term. 

e review revealed no studies that reported data related to the mental health of clients 

lth

tive 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. 

t

some of those included in studies we reviewed

conditions. Stu above, to look at

mental health status as an outcom

mental health status as a predic

evaluation resp

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 

Further support for this recommendation comes from the observation that health outco

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 socia

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 environ

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

The literatur

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 hea

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 posi

Here again our findings were absolute: not a single study looked at the impact of consumerdirected 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 tha

 had identified or unidentified mental health 

dies may well have missed an opportunity not only, as noted

e of consumer direction or orientation, but also to look at 

tor of the impact of innovative models of care by failing to screen 

ondents on mental health status. Given the fragility of deinstitutionalization for 

108 
psycho ial in be

documented ca

Includ ildr

None of the stu

consumer-orie

of a medical home approach to pediatric care that shares many of the values and some of the 

eded;

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 consumeroriented services for people with disabilities. The themes may be summed up as follows: 

1. Services need to be individualized, with consumers offered as much flexibility 

and choice as is feasible in relation to a given type of care. 

2. 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. 

soc teraction between caregivers and care recipients with mental health needs to

refully.

e ch en with health care needs and their families in evaluation studies. 

dies identified for this report looked at outcomes of consumer-directed or 

nted long-term care for children, despite intense interest in the implementation 

strategies of consumer direction. A research taxonomy and protocols for evaluation are ne

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. 

109 
3. To achieve flexibility and acco te diversity, consumers with different 

experiences and perspectives must be included at all stages of program design, 

implementation, and eva

4. The achievement of these goals requires the designation or establishment of an 

ning

service options.

some extent consumer organizations 

d approach, with a

one-size-fits-all (or at best a limited) range of service options to a cross-disability, lifespan 

responsibility for ensuring that a set of definitions, protocols, and strategies is available to 

n an ongoing basis across disability groups and age categories, that resources 

on

sumer-defined outcomes in domains that include not only direct satisfaction 

mmoda

luation.

oversight agency within government, responsible for identifying needs, conve

planning groups, and ensuring the broadest possible continuum of

Taken as a whole, these themes and the recommendations they encompass imply a major 

shift in the way government, private agencies, and even to

think about disability. It implies a shift from a narrow diagnosis-focuse

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 

support the development of a knowledge base in this area, that those tools are used to assess 

consumer needs o

are directed to fill gaps in the service continuum, and that the programs meet rigorous evaluati

standards for con

with services, but also quality of life, health, mental health, and function. 

110 
IX. 

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8.

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ices

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.

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121 
122 
Appendix A. 

Consumer-Oriented Health Care Advisory Board 

Name Disability Type 

Charles Carr, Executive Director 

Northeast Independent Living Center Physical 

Linda Horton St. Hubert 

AIDS Alliance for Children, Youth and Families Physical/Chronic Illness 

Polly Arango, Parent and Advocate 

Algodones Associates Multiple 

Owen McCusker, Director 

Community Living Alliance, ILC Sensory 

Marilyn Rohn, Consumer and Advocate Mental Health

Denise Payne, Consumer and Advocate Physical (CP)

Lou Brothers,* Consumer and Advocate Cancer Survivor 

Joe Flores,* State Administrator Physical 

Patricia Osborne Shafer, Parent and Clinician 

Beth Israel Deaconness Medical Center Developmental 

Peter Thomas, Esq. 

Powers, Pyles, Sutter and Verville Physical 

Kay Tucker, Consumer and Advocate

Crossroads Employment Services Mental Health

* Resigned for health reasons 

123 
124 
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. 

125 
126 
Appendix C.1.

, 2003

I. trod

Denise Payne, wheelchair user, born with CP, a self-advocate from Florida, very involved with 

Medicare bure

Charlie arr, f ,

person th ph

disabili s in m

Linda Horton, e AIDS Alliance for Children, Youth 

and Fa

Marily ohn, d 

Medica and

Kay Tucker, from California, a woman with bipolar disorder, very involved with passage of 

based 

The HDWG project team of Carol Tobias, Debby Allen, Kate Brown, Regina Murphy, and Sarah 

DuRei ticip

II. lities

Kate Brown read the roles and responsibilities as provided in the package of materials sent to the 

membe ip in accepted roles and responsibilities as read. An invitation 

was ex ded h the project team. 

NCD National Consumer Advisory Board 

Meeting Minutes 

June 30

In uctions 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. 

aucracy and access to needed equipment. 

C rom Massachusetts, founder and Executive Director of independent living

wi ysical disability, involved in access to primary health care for persons with

center

tie anaged care systems. 

woman living with HIV in DC, works at th

milies, with a focus on Medicaid.

n R person with mental illness from New Mexico, involved in issues of Medicaid an

re Housing, on State Council for Consumer Affairs. 

Parity Bill in state and cultural competence, recently attended a conference on evidencepractices at the California Institute for Mental Health. 

Polly Arango, Lou Brothers and Owen McCusker did not participate in the conference call. 

par ated in the call. 

Joint Review of Roles and Responsibi

rsh advance. All members

ten to all members to be in touch wit

127 
III. Overview of the Project Goals 

Carol Tobias provided an overview of the ten-month engagement, explaining the primary fo

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 th

focus of our research in this phase of the project: 

• Laws and regulations that promote consumer-oriented reforms and practic

• Current programs and practices that are documented to be e

cus

e

es; and

ffective or show

promise, without the benefit of evidence-based evaluation. 

fered the following additional areas: 

ral 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; 

Carol th exp orts that have been

evaluat with or don’t work. Carol read

a list of entif ng-term) that “work” and asked the 

membe ip to gain, offer input. The membership 

offered the following ad

• 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. 

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 of

• Medicaid Buy-In Programs—protection of benefits when returning/maintaining 

work/income; 

• Provider Education on disability and cultu

• 

• Benefits Counseling; 

• PCA Payment Reforms;

• Jail Diversion Programs—dual diagnosis; 

• Minority Sensitive Programs; 

• Micro-Entrepreneurship for self-employed; and 

• Mental Health Parity. 

en lained our research efforts to identify those reform eff

ed outcome measures identifying those reforms that work

id ied reform outcomes (intermediate and lo

rsh comment on the value of them and once a

ditional outcomes: 

128 
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 

129 
130 
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 bestpractice outcomes or emerging evidence practices regarding consumer direction and consum

orientation; essentially, what is known to be effective, ineffective, why, and how. The distin

between consumer direction (long-term care and supports)

er 

ction

and consumer orientation (broad 

initiatives to expand access such as TWWIIA) was offered. In the initial phase of work 

omes, resulting in a limited number. At this time, the 

HDWG has identified the knowledge, gaps, and conflicting evidence. The primary purpose of 

on of future

d

,

,

th.

pic areas: 

long-term care and managed care (See documents). For long-term care, while satisfaction and 

the

consumer direction models, and safety and perceived quality of care never declined. All other 

nd

undertaken since the first board call, the HDWG has conducted a massive literature search to 

discover the body of evidence-based outc

the call today is to gain input from the membership on the findings to date and directi

qualitative research to inform the final product due to NCD. 

Two new members, Peter Thomas and Patty Osborne Shafer, began the introductions followe

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 heal

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 to

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

outcomes—cost, impact on caregivers, community integration, unmet needs, health status, a

access to health care services—met with mixed results. 

131 
Owen asked about the defining characteristics of consumer-directed verses agency-direct

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 depe

ed and

ndent on an array of variables

at any given point in time and explained the ethical and safety concerns and conundrums when 

hen

s

there

e

een the researchers

er interest in/ability 

with control. In all instances of consumer direction, consumers need to assess what they are 

Peter commented on the inadequate budgets in the Cash and Counseling programs and the lack 

of incentives for provider participation. 

anaged care. 

y

le. In several studies, 

) 

re 

was made and the influence of the regulatory environment on this effect—the ongoing tension 

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 w

reviewing the medical literature. Patty further enumerated that treating persons with disabilitie

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

is a large degree of shared decision-making within self direction. Charlie acknowledged that th

“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—betw

and the consumers, in addition to the variability and individuality of consum

being asked to do. The membership concurred with a fundamental principle that consumer 

involvement in defining the research outcomes is critical. 

Carol then directed the discussion to the findings of the literature on m

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 particularl

helpful or useful. In one article, it was not read by over half of the samp

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 mo

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 

between regulation and implementation of programs. Charlie commented on the Massachusetts 

experience involving consumers in the design and implementation of its managed care program

132 
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. 

HE HDWG look at DeJong and Freiden for

possible outcomes literature. 

ajor 

,

to come erience with the services, 

program

workin irect esearch.

In respo e to the

concept as a “hub”—one endorsed by the AAP

continuous, and consistent services on an individualized basis involving partnership on the 

parts of rent

the prac ce is

y

n the topic of mental health parity, the advent of parity was associated with either

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 T

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 m

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 

 from consumers themselves—those who had first-hand exp

s, and reform initiatives. Polly recommended the Family Voices model of researchers 

g d ly with consumers to develop and interpret the r

ns a request for explanation of the medical home concept, Debby explained

, emphasizing comprehensive, coordinated, 

pa s and providers of children with special health care needs. Polly indicated that

ti 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 ever

article studied o

133 
the simultaneous introduction or inte re. No evidence of parity causing

more than a short-term and small inc erature. Some plans experienced

rapid and dram

No studies reviewed indicated that decreased access or quality. 

A shift in location of care away from nd increased “treatment 

prevalence” (percentage of persons uality was addressed in a limited 

way (mostly administrative) and generally scored well as a measure. More substantive patient 

at cost increases have been cited as a reason for resistance 

is cost neutral. 

tes

sed 

Another example of an emerging practice for further pursuit with key informants is the Ticket-tote of

ortance

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 

. Charlie

ore

information on the Ticket-to-Work implementation. 

e HDWG’s request for specific questions

to be posed and answered in the key informant interviews, members offered the following: 

• 

• sistance; 

• ings/accomplishments are in the early implementation of

• 

• 

In closing, Pol stions need 

to be asked of

of 2004 and th

for the NCD report. A number of board m

of the project. 

nsification of managed ca

rease was found in the lit

atic reductions in cost. 

cost containment resulted in

inpatient to outpatient settings a

receiving care) is shown. Q

outcomes are needed. It was noted th

to parity; yet evidence shows it

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 estima

that ninety-five percent are not receiving it. She remarked on the significance of the increa

treatment prevalence as important. 

Work program. Following a brief explanation of the program, Charlie indicated that the sta

New York is offering ILCs incentives to enroll their clients into the program and the imp

number of states using the Medicaid Buy-In provision with program implementation

suggested that the HDWG contact Connie Garner in Senator Kennedy’s office for m

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 th

• How cultural competence fits with these initiatives; 

Direct care workforce shortage; 

Lack of standards for personal care as

• Individual competencies to managed care; 

What the find

Real Choices; 

Don’t forget the kids; and 

Talk with CMS about initiatives underway and planned direction of agency. 

ly remarked and it resonated among the group—ultimately, these que

the consumers. The next board teleconference will take place in January/February

e primary focus of input from the board will be framing the recommendations 

embers commented on the complexity and challenge 

134 
Appendix C.3. 

NCD National Consumer Advisory Board 

Meeting Minutes 

March 17, 2004

I. Introd

Brief re-introd uding

Marilyn ohn,

Thomas. Also project team of 

Carol T ias, D

Shafer, and De

The HDWG br

advance of the

II. Litera

It was explained that the first draft document, Literature Review—Consumer-Directed LongTerm Care, was a summary version of a literature review section conducted by the HDWG—

nvited to

• that the 

• 

uctions

uctions were made by those members present on the teleconference incl

R Charlie Carr, Polly Arango, Linda Horton St. Hubert, Kay Tucker, and Peter 

present were Carol Novak from the NCD, and the HDWG

ob ebby Allen, Kate Brown, and Kate Tierney. Owen McCusker, Patty Osborne 

nise Payne were not able to join the call. 

iefly reviewed the purpose and content of the three draft documents sent in 

meeting and encouraged the membership to actively comment on them. 

ture Review—Consumer-Directed Long-Term Care 

a synopsis of the approach undertaken and resultant findings. The membership was i

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

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. 

135 
• The more subjective the outcomes (e.g., quality of life), the larger a sample siz

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

e

• 

• quality of life and

• npaid care.

el for study in the area of consumer-

• e as or safer than traditional

ainst consumer-directed care. 

• 

e DD community, where HCBS programs 

deinstitutionalize people with disabilities, HCBS programs were generally costeffective because community care is cheaper than institutional care. In other 

special health care needs), where HCBS 

utionalization, they are generally not costeffective, because it is very difficult to prove who would or would not be forced 

ns, programs

e only if they target participants very selectively (e.g., require 

applicants to be screened for nursing home admission). 

III. 

The following

Key Informant

• 

passing all Medicaid risk onto states as a means of flexibility. 

e.

more 

• 

the cost factor of unpaid care. 

Look to the National Association of Family Caregivers for study of u

• Long-term care insurance is a possible mod

directed care. 

The findings of consumer-directed care being as saf

agency-directed care were conclusive and should be highlighted since lack of 

safety is one of the biggest arguments ag

• 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 th

communities (e.g., elders, children with

programs seek to prevent or delay instit

into institutionalization lacking such programs. For these populatio

are cost-effectiv

Key Informant Cited Barriers to Consumer-Directed Care 

comments and suggestions were made in reference to the second draft document, 

Cited Barriers to the Adoption of CD. 

Caution for citing the Medicaid bureaucracy as a barrier; may play into the 

current climate of

• 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 

persuasiv

• 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

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. 

136 
• The Independence Plus templates are too broad and give too little direction to 

the states on how to provide consumer-direction and what determines cons

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 

umer 

(setting individualized budgets, administering funds, etc.). 

• 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. 

• 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. 

137 
Prior to adjourning the meeting, the H e lack of research with mental 

health outcomes. Several members re rojects of wellness models 

replacing medical on will be

forthcoming. Caut e was expressed.

nding 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 

embers were thanked for their participation on the CAB. 

DWG commented on th

ferred to different pilot p

models across the country as just beginning for which evaluati

ion for adoption of the PACT model, describing it as regressiv

The HDWG will be se

to the NCD. All m

138 
Appendix D.1. 

Outcomes Literature Review Protocol 

Date Reviewed: 

Type of Sourc

(Peer R iew J , Foundation Report, Web site/Selfublished, In-house study (HDWG))

m intervention?) 

Affiliation of Authors: 

tudy Purpose

• Pilot/Feasibility 

• Cost-Benefit Analysis 

ctiveness Analysis

Study Design 

(RCT, Q asi-ex onal,

Case Control, P nt (before/after), Cross-sectional, Case study, Ecological, Qualitative) 

Name of Reviewer: 

Article Citation: 

e

ev ournal, Government Report, Newsletter

P

Funding Source for Analysis (different fro

S

• Process Evaluation 

• Outcome Evaluation 

• Cost-Effe

• Other:____________ 

u perimental, Cohort—retrospective, Cohort—prospective, Cohort—ambi-directi

re-experime

139 
Study Duration 

Geographic Location 

Target Population Demographics 

ge

Disability Pro

ses/conditions—(physical, psychiatric, developmental, CSHCN, SED, 

illness, sensory)

• Functional Limitations (IADL, ADL) 

ample Size and Unit

For example: individual, clinic, community 

Observation unit 

or example: individual, clinic, community 

ampling 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) 

Describe Inclusion and Exclusion criteria related to demographics. For example: race, age, 

gender, SES (proxies can be income, insurance status, education), langua

file

• Diagno

chronic

S

F

S

• 

140 
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 

141 
142 
Appendix D.2.

Policy Study Protocol 

ate Reviewed:

rticle Citation: 

dy (different from intervention?): 

Purpose of the Study: 

Study Design: 

Geographic Location(s): 

Study Subjects (e.g., state officials, health plans, ILCs): 

Name of Reviewer: 

D

A

Type of Source: 

Funding source for Stu

Affiliation of Author: 

143 
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):

144 
Appendix E. 

C

Managed C

Manag care past

two decades, a people

with disabilities. The managed care incentives to control or reduce costs, and the traditional 

e

in

 parallel those in re ther findings: studies onsistent and/or

seem to reflect complex interactions between consumer and program attributes and contextual 

t fully elucidated in stu reports

t either the sorts of individuals who may be better cared for in managed 

the models of ma ork b st for spe ific

he specialty program d ix J t t

for some consumers, es not et offer us science r

o client needs to optim es. 

npublished eratur studie that exam ed the

ith d bilitie do sc d

ed outcomes evidence. We identified 13 studies with sam izes ov , cov

ight significantly different topics, that addressed the service or satisfaction outcomes among 

are enrollees 

with Medicare fee-for-service enrollees; 

• One study that compared the experiences of older and younger Medicare managed 

care en

Four studies ople d e

and Medicare who ed in m d care plans with t received

services in the fee

O t a en id ma age

with disabilities before and after their enrollment in managed care; 

onsumer-Oriented Managed Care Outcomes

are Outcomes

ed has been a major trend in the financing and delivery of health care over the

nd disability advocates have raised concerns about how this trend affects

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 peopl

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

fee-for-service health care systems. 

Results in this area lation to o are inc

factors that are no dy . There is no basis, therefore, for drawing 

general conclusions abou

or fee-for-service systems, or naged care that are likely to w e c

consumer groups. T describe in Append do sugges hat some managed

care models can work well but research do y a fo

matching system attributes t ize outcom

The search of published and u lit e revealed few s in

impact of managed care on people w

few contain

isa s. There were zens of de

ple s

riptive stu

er 75

ies, but

ering

e

people with disabilities enrolled in managed care plans. 

These 13 studies included the following: 

• Two studies that compared the experiences of Medicare managed c

rollees; 

• that compared the experi

were enroll

ences of pe

anage

ually ligible for Medicaid 

hose who

-for-service system

mpared the experi

s; 

• ne s udy th t co ces of Medica n d care enrollees

145 
• One study that compared the satisfaction of Medicaid d care enrollees

disabilities with Medicaid managed rollees received its

b n e for amilies st

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 wer g lans with the ex ilar 

individu in inde ; and

• One study that co periences of dually eligible managed care 

enrollees who d ls of g

prov vie tudies and eight different topic areas considered 

in this review. It is important to note that four of these studies, conducted of t

programs, were studies of specialty managed care programs designed to serv

ble f e all operate de

payment systems for relatively li

Populations Covered Number of Authors

manage

with care en who benef

ased on Tra sitional Assistanc Needy F atus;

• 

e enrolled in mana ed care p

mnity plans

perience of sim

als who received care 

mpared the ex

were enrolled in two ifferent mode mana ed care.

Below we ide an over w chart of the 13 s

hree different

e people who were

dually eligi or M dicaid and Medicare. These pr r risk-adjusted

mited populations.

ograms d un

Studies

Medicare MC vs. FFS 2 Iezzoni et al. Stafford et al. 

Medicare MC older vs. younger 1 Gold et al.

Medicaid MC vs. FFS before and after 2 Schaller-Anderson, Inc. Minot et al. 

Dual eligible MC vs. FFS Burton et al. Kane et al., 

2001 et al. 4 Kane et al.,2003 

Chatterji 

Medicaid MC plan type differences 1 Hill and Wooldridge

Medicaid MC for disabled vs. TANF 1 ORC Macro 

Employed MC with chronic illness vs. FFS 2 Stafford et al. Druss et al. 

Dual eligible plans—model differences 1 Kane et al., 2002

Studies of specialty managed care programs for 

dual eligibles 4 Kane et al., 2001 Kane et al., 

2002 

Kane et al., 

2003 

Chatterji

et al. 

The diversity of these studies makes it difficult to draw any general conclusions about the impact 

ties. The research conducted was among different study 

y 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 me

Author Year Size Loc. Pop. Sample 

nse 

Rate Topic 

of managed care on people with disabili

populations (Medicare, Medicaid, duall

thods. 

Sample Respo

Gold et al. 199 a enrollees 

llees

Nationally

representative 

sample 

64% 

Medicare MC older and 

younger memb rs, 

disenrollees 

7 3080 N t. Medicare HMO

and disenro e

Hill and 

Wooldridge 2002 1293 TN enrollees indatory) 

Unclear if random. 

Stratified sample. 

H w characteristics of 

MCOs affect access and 

quality of care 

MA SSI

TennCare (man

o

ORC Macro 2002 2742 CA es, Random Satisfaction MA ABD enrolle

voluntary

146 
Author Yea c op. mple

nse 

r Rate Topi

Sample 

Size Lo . P Sa

Respo

c

Schaller

. 2002 538 cost O

tory

Universe 92% Satisfaction and cost Anderson, Inc K

MA SSI high cost 

managed care 

enrollees(manda ) 

194 sat Unk 66% 

Iezzoni et al. 2002 16403 Na beneficiaries

y

Nationally

representative 

sampl

Mostly FFS <>65

comparison, some 

Medicare MC vs FFS

t Medicare

in communit e

Burton et al. 2001 200 M

s as

cal FFS Random sample 81% Voluntary MC for Dual 

Eligibles, comp to FFS D

Plan member

compared to lo

and Nat’l FFS 

Minot et al. 199 4 care, 94% 

Medicaid MC satisfaction 

compared to F

experience of same group. 

Voluntary program

6 1 3 NJ MA managed

all ages 

FS 

Stafford et al. 2003 44281 NE

yed and Medicare 

with 

or asthma

Universe NA 

Employed and Medicar

MC vs FFS—Rx access 

for people with chronic 

illness 

populations

diabetes, CHF

Emplo e

Druss et al. 2000 DK NE d Random sample 72% MC vs FFS—chronic 

illness Privately insure

Kane et al. 2001 ~400 M rs and 

two comparison groups Random sample 78%–90% MC Specialty Plan—

MSHO N Dual eligible elde

Kane et al. 2002 629 WI Dual eligible over age 55 Universe PACE compared to 

Partnership 

Kane et al. 2003 1273 MN Dual eligible elders and 

two comparison groups Random sample 83% MC Specialty Plan—

MSHO 

Chatterji et al. 1998 1098 Nat. Frail dual eligible elders 

and a comparison group 

PACE members 

and applicants who 

did not enroll 

MC Specialty Plan— 

PACE, longitudinal survey

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 

Author Year N Pop. Access Satisfaction Utilization 

Consumer 

Participation 

Change 

in Health 

Status Cost

Gold et al. 1997 3080 

Medicare HMO 

enrollees and 1 1 

disenrollees 

Hill and Wooldridge 2002 1293 in TennCare 

(mandatory) 

1 1 

MA SSI enrollees 

ORC Macro 2002 2742 MA ABD enrollees, 

voluntary

1 1 

Schaller Anderson, Inc. 2002 538 cost 

MA SSI high cost 

managed care 

enrollees (mand)

 1 1 1

 194 sat 

147 
Iezzoni et al. 2002 16403 

Medicare 

beneficiaries 

in community

1 1 

Burton et al. 2001 200 

Plan members as

compared to local 

FFS and Nat’l FFS

1 1 

Minot et al. 1996 143 MA managed care, 

all ages 1 1 

Stafford et al. 2003 44281 

Employed 

and Medicare 

populations 

with diabetes, 

CHF or asthma 

1 

Druss et al. 2000 DK Privately insured 1 

Kane et al. 2001 ~400 

Dual eligible 

elders and two 

comparison groups

 1 1 1

Kane et al. 2002 629 Dual eligibles over 

age 55 

Kane et al. 2003 426 

Dual eligible 

elders and two 1 1 1

comparison groups

Chatterji et al. 1998 1098 

Frail dual eligible

elders and a 

comparison group 

 1 1 1

TOTAL 13 7 11 3 1 3 1 

Satisfaction 

Eleven of the studies examined satisfaction with care among people with disabilities enrolled

managed care plans, usually in comparison with populations that were not enrolled in mana

care, or with anot

in

ged

her population enrolled in managed care. 

.

o

older and younger Medicare 

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 t

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 

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 

148 
compared with people who received Medicare fee-for-service benefits. They found that manage

care enrollment made no significant difference in satisfaction with care. Older members wer

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 fou

different health plans in Tennessee. Study participants were under the age of

d

e

r

65, lived in the

community, and received neither Medicare benefits nor Home- and Community-Based Waiver 

d at

ducted in Spanish 

and English of 143 SSI Medicaid managed care enrollees in New Jersey. Enrollment in this 

led

e

f 2,742 members received surveys in English, Spanish, and Vietnamese. The 

satisfaction survey included many of the questions contained in the widely used Consumer 

ore 

ect

s,

Services. Approximately 80 percent of the sample was African American. The study looke

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 con

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 disab

(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. Th

random sample o

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 m

likely than ABD members to report that their doctors explained things well and showed resp

for what they had to say. TANF families also reported fewer problems getting specialty referral

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

149 
enrollees with disabilities. Eighty percent of these individuals reported that their managed ca

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 satis

with the ease of obtaining prescriptions, health care services received in general, and the ea

of seeing a doctor after enrollment in managed care as compared with prior experiences in

fee-for-service system; however, authors did not report if this difference was signific

re

faction 

se

the

ant. It

should also be noted that this was a foundation-published report, and the report authors were 

if

rvices under one type

of plan than the others. In general, the managed care enrollees (members of IPAs or prepaid 

ore for 

31

samples 

included race (Elder Health serviced primarily an African-American population), age, and selfn

ble

dually

ps: 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. 

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

people with chronic illnesses were more satisfied with their health care se

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 Baltim

dually eligible elders, with 201 local fee-for-service dual eligibles and a national sample of 5

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

reported health status. Self-reported health status of the two Baltimore cohorts was lower tha

the national sample, and the national sample was older and had more ADL needs. Dual-eligi

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

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 grou

150 
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 comm d

more satisfacti

minor differen utable

to geographic d

Kane et al., 20 r the research but was able to look at changes over 

time. A in, th

clients were m cisionmaking about medical care, and 

MSHO milie et al.

concluded that rs’

experiences, fa . 

conducted a study of the Wisconsin Partnership Program, a program for dual 

ults 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 

es

lees

.

n

n 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 

o-year

found

s, were 

unity samples, but MSHO nursing home residents and families expresse

on with several aspects of care. In summary, Kane et al. concluded that the 

ces in satisfaction that did exist among samples were probably attrib

ifferences and the availability of resources in different communities. 

03, used the same model fo

ga ere were few differences in satisfaction among the three samples, but MSHO

ore satisfied with their involvement in de

fa s reported significantly lower burden in five areas than controls. Thus, Kane

although MSHO did not seem to differ significantly in terms of membe

milies of members experienced relief under the program

Kane et al., 2002,

eligible ad

own physicians and did not require them to participate in adult day care. Health care servic

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 enrol

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 satisfactio

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 a

medical and social service care. The Chatterji et al., 1998, study was conducted over a tw

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

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 problem

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. 

151 
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). 

on et al., 2001;

Schaller Anderson, Inc., 2002; Chatterji et al., 1998). 

Seven of the studies, including six of those mentioned above, examined access to care for 

nth

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 

anaged care enrollees were more likely to use 

rvice enrollees in most cases. This held true for both 

expens and

service tient

enrollees had n sts

that the ffere

service liver

Iezzoni et al., 2

beneficiaries were significantly less satisfied with access to specialists than Medicare fee-forservice nefic

care at night an

1997, also look r 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 

l of services, inadequate home health care, 

ospital when the enrollee thought it was 

needed. Gold et al. also found that younger fee-for-service enrollees with disabilities, like their 

s under

• 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; Burt

Access 

individuals with disabilities or chronic illness who were enrolled in managed care. The seve

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

primary care visits, the authors found that m

chronic disease medications than fee-for-se

ive inexpensive medications. It should be noted, however, that while the fee-forpa s faced high deductibles and coinsurance for prescription drugs, the managed care

o deductibles and only modest co-payments for prescription drugs. This sugge

di nces in utilization might be associated with the cost of medications under each 

de y model. 

002, found that older Medicare health maintenance organization (HMO) 

be iaries. HMO beneficiaries also were less satisfied with the availability of medical 

d on weekends, but the difference was not statistically significant. Gold et al., 

ed at access to care fo

appointments, delays while waiting for plan approva

and lack of referral to a specialist or admission to a h

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 wa

152 
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. 

e

r

r

experiences of the ABD population with the TANF 

population, ORC Macro, 2002, found that ABD members were less likely than TANF members 

re 

etwork.

erience 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 

care than those in both the local and national fee-for-service

programs. 

2).

.

lty program for dually eligible participants 

demonstrated better access on all fronts than comparable fee-for-service programs 

(Burton et al., 2001). 

eral

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 th

specific health plan model. Enrollees in the fee-for-service health plan, however, reported greate

access to preventive care and more visits to manage their chronic conditions than enrollees unde

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

to get a referral to a specialist or to get care right away for an illness or injury, and were mo

likely to experience delays in health care while waiting for approvals from their health n

Burton et al., 2001, compared the experience of dual eligibles in a managed care specialty 

program with the exp

had better access to preventive

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, 200

• 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 specia

Changes in Health or Functional Status 

Three studies examined changes in health status under managed care, the first looking at gen

managed care, and the other two looking at specialty managed care programs. Schaller 

153 
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 a

2003, found no significant differences in function over time for dually eligible enrollees in 

MSHO or for two fee-for-servic

l.,

e comparison groups.

Chatterji et al., 1998, found that PACE enrollees reported better health status and quality of life 

e 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 

s

rison group members originally fluctuated, 

and ultimately dipped in the second year. 

o studies (Chatterji et al., 1998; Schaller Anderson, Inc., 2002) found that 

nt

s

service utilization over time. Kane et al., 2001, found that MSHO enrollees were more likely to 

erji

d

r

itude

of the difference did appear to diminish over time. 

over tim

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 wa

very stable over time, while the percentage of compa

In summary, tw

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 significa

differences in functional status change between managed care enrollees and comparison group

(Kane et al., 2003). 

Changes in Utilization 

Three studies of two specialty programs for dually eligible enrollees examined changes in 

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. Chatt

et al., 1998, found that PACE enrollees had much lower rates of nursing home utilization an

in-patient hospitalization than did comparison group members. PACE enrollees showed highe

utilization of ambulatory services. These differences between PACE enrollees and comparison

group members were still evident two years after enrollment in PACE, although the magn

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, 

154 
finding that MSHO enrollees were more likely to be involved with decisionmaking than nonenrollees. 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-forservice 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). 

155 
156 
Appendix F.

Key Informant List 

Name Perspective Area of Expertise Organization Location 

Polly Arango Consumer CSHCN Algodones Associates Algodones, 

NM 

Julie Beckett hildren 

with disabilities, esp. Medicaid

Secondary

Consumer 

Healthcare financing for c

waivers and private coverage

Family Voices Iowa

A.E. (Ted) er Direction/Self- eles, 

Benjamin 

Researcher Consum

Determination 

UCLA Los Ang

CA 

Randy Brown Researcher Medicaid, LTC, Managed Care Mathematica Princeton, NJ 

Cheryl Bushnell

tor

State and Disability tment of n, MA

Administra

Health MA Depar

Public Health

Bosto

Charlie Carr Persons with

Disabilities/Independent Living

t

Independent Living 

Consumer Northeas ence, MA

Program, Inc. 

Lawr

Henry Claypool Consumer/Policy/ Disabilities g Washington, 

Advocacy

Advancin

Independence 

Modernizing Medicare

and Medicaid 

DC 

James Conroy,

PhD 

utcomes enter for Outcome

ysis 

Policymaker/ eth, PA 

Researcher 

Disability Program O C

Anal

Narb

Suzanne Crisp Researcher LTC Medstat Cambridge, 

MA 

William Ditto Program 

Administrator 

Consumer Direction/SelfDetermination NJ Office on Disability Trenton, NJ 

Services 

Virginia Dize Policymaker/ 

Administrator 

LTC, Directed “Independent Center for 

f State 

ces

Washington, 

Program Choices” Advancement o

Comm Servi

DC 

Pamela Doty, PhD olicymaker/ 

Researcher 

ity

DC 

P LTC, assisted living, commun

care 

ASPE Washington,

Sue Flanagan TC, state 

programs Consulting Group DC 

Researcher/ 

Consultant

Cons. Directed L Westchester Washington, 

Donna Folkemer Medicaid Buy-In; Aging and 

and managed

National Conference 

f State Legislatures 

Program Washington, 

Manager disabilities; LTC

care 

o DC 

Wendy Fox- Policy Specialist Long-Term Care National Conference Washington, 

Grange of State Legislatures DC 

Lex Frieden Researcher Disability/Independent Living NIDRR Houston, TX

Rick Greene on Washington, 

DC 

U.S. Administration

Aging 

Bob Griss Systems and

and political im

program/legislative 

pact of health

Washington,

DC 

157 
Name Perspective Area of Expertise Organization Location 

care 

Patti Hackett Secondary

Consumer 

Youth and adults into 

transition— health coverage 

issues 

Self-employed FL

Michelle Herman

res

Policy Associate Mental Health National Conference 

of State Legislatu

Washington, 

DC 

Chris Hess 

Administrator 

Community Care for 

the Elderly

Milwaukee, 

WI 

Program Self-Direction for Elderly

Diane Hovey, PhD Professional 

er

ith special health care Family Institute for Maple-wood, 

artist/consum

Families w

needs Creative Well-Being MN 

Henry Ireys, PhD Researcher Children with Special Health Mathematica eton, NJ 

Care Needs/Managed Care 

Princ

Steve Landkamer Program 

r

Community Based/Integrated

are

hip onsin,

Administrato C

Wisconsin Partners

Program 

Wisc

MN 

Kevin Mahoney, Program 

dministrator/

her 

Cash and Counseling stnut Hill, 

PhD A

Researc

Professor, Boston Che

College MA

Owen McCusker Consumer Community Living Madison, WI

Alliance 

Mark Meiners, 

PhD 

R

Program 

esearcher, 

Administrator 

Medicaid and Medicare d ark, 

Integration, Professor 

University of Marylan

Center on Aging 

College P

MD 

Bob Michaels Researcher Independent Living AZ

Charles Moseley,

EdD 

Program 

Administrator, 

Policymaker 

Self-Determination NPO on Self 

Determination; Prof 

at UNH; National 

Association of State 

Directors of DD

Services 

Durham, NH; 

Alexandria, 

VA 

Patricia Neuman Policy Health Policy Kaiser Family

Foundation 

Washington, 

DC 

Jim Perrin Children with Special Health 

Care Needs 

MGH/Harvard Med 

School 

Boston, MA 

Mike Radu Senior VP of 

Business 

Development 

Managed Care United Health Care Phoenix, AZ

Marilyn Rohn Consumer Mental Health Los Alamos, 

NM 

Sara Rosenbaum Research/Policy/

Law

Health Services Policy and 

Management 

George Washington 

University 

Washington, 

DC 

Marcie Roth Policy Advocate Independent Living National Spinal Cord 

Injury Association 

(NSCIA) 

Bethesda, MD 

John Rother Legislation/Public 

Policy 

Seniors/LTC AARP Washington, 

DC 

158 
Name Perspective Area of Expertise Organization Location 

Mark Sciegaj Researcher, 

Professor 

Racial differences in consumerdirected preferences Lasell College Center 

for Research on Aging 

and Intergenerational 

Studies 

Newton, MA 

Peter Thomas Federal law and

legislative 

practice (lawyer) 

Health care and disability policy, 

Medicare coverage and 

reimbursement policy, medical 

rehabilitation research, and 

vocational and community

supports 

Powers Pyles Sutter 

and Verville PC 

Washington, 

DC 

Jane Tilly Researcher Medicaid, HCBS, LTC, and 

Cons Direction

The Urban Institute Washington, 

DC 

Karen Tritz Researcher Consumer-directed health care Congressional 

Research Service 

Washington, 

DC 

Kay Tucker Consumer Crossroads 

Employment Services 

Sacramento, 

CA 

Conni Wells Children with special health care 

needs and mental health 

ED of FIFI (Florida 

Institute for Family

Involvement—parent 

organization in FL) 

FL

Anita Yuskauskas Disabled and Elderly Center for Medicare 

and Medicaid Services 

MD 

159 
160 
Appendix G.1. 

Consumer-Directed and Consumer-Oriented Health Care for People with 

Disabilities 

Key Informant Interv

The Health and Disabi as

sent this interview gui )

to assess the state-of-t

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 

responsive mo ning the

spectrum of children to elders and all types of disability. 

1. ices and 

supports for people with disabilities are contradictory, ambiguous, and subject 

to more than one interpretation within individual studies. For instance, 

• In some studies, consumer direction resulted in fewer unmet needs; 

in other studies, there was no change. 

fective, but in many studies, 

• Also, th ccess measures. 

a. 

plem are

your vi o institutional

care as a means to improve outcomes? 

iew Guide—Long-Term Care 

lity Working Group at the Boston University School of Public Health h

de to you as part of a project for the National Council on Disability (NCD

he-art in relation to consumer-directed and consumer-oriented services. 

broad topic of long-term care is to look at innovative and 

dels aimed at enhancing care for individuals with disabilities—span

The findings of our literature review in relation to long-term care serv

• 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. 

• Consumer direction could be cost-ef

cost-neutrality was not achieved. 

ere were mixed results on health status and a

First, we would like to explore your perception of the rationale(s) for 

im enting long-term care options for people with disabilities. What

ews about home- and community-based alternatives t

161 
b. 

evaluat rature.

What is your sense of the extent of consumer involvement?

c. In term

disabilities are generally satisfied with community-based supports, 

hether or not they are consumer-directed. We have noted some apparent 

advantages to consumer-directed care for those who choose consumer 

d those with relatives providing care are particularly 

favorable to the consumer-directed models. Do these findings resonate 

with you?

to the age, sex, or race/ethnicity of consumers or to particular geographic 

regions?

• Are there particular findings or experiences in related fields that 

you feel confirm or challenge these studies?

s we should be

aware of in assessing the validity of these findings?

at have

g how

reforms in this area affect particular populations? 

Consumer involvement in the planning, design, implementation, or

ion of long-term care systems is not well reported in the lite

s of research findings, our review suggests that consumers with 

w

direction. In general, research findings indicate that younger persons 

with disabilities an

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 

f. Do you find those data persuasive?

• Are there methodological or measurement issue

g. Do you think there are important gaps in practice and/or research th

not been and are still not being addressed, in terms of understandin

162 
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! 

163 
164 
Appendix G.2. 

ed and Consumer-Oriented Health Care for People 

iew Guide—Managed Care

Consumer-Direct

with Disabilities 

Key Informant Interv

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 nhan he spectrum of 

children to eld and

1. The findings of our literature review in relation to managed care for people with 

rpr

• 

and medications, and in other studies, fee-for-service enrollees had better 

access to care. 

a. 

plem

views a tcomes? 

b. 

evaluat e literature.

What is your sense of the extent of consumer involvement?

at e cing care for individuals with disabilities—spanning t

ers all types of disability. 

disabilities are contradictory, ambiguous, and subject to more than one 

inte etation within individual studies. For instance, 

In some studies, managed care enrollees had better access to specialists 

• Satisfaction was likewise, mixed. 

First, we would like to explore your perception of the rationale(s) for 

im enting managed care for people with disabilities. What are your 

bout managed care as a means to improve ou

Consumer involvement in the planning, design, implementation, or 

ion of managed care systems is not well reported in th

165 
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 

e

ated

ings resonate

with you? 

vant evidence-based outcomes known to you?

s, or

aphic

f. Do you find those data persuasive?

related fields that

you feel confirm or challenge these studies?

s 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? 

home care available to younger consumers with disabilities. Finally, w

found that overall satisfaction with a given system was closely associ

with the level of choice available to consumers. Do these find

Are there other rele

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 categorie

to the age, sex, or race/ethnicity of consumers or to particular geogr

regions?

• Are there particular findings or experiences in

• Are there methodological or measurement issue

166 
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! 

167 
168 
Appendix H.

s P

YR 

Enact Title

Target

Population(s) Intervention(s)

Federal Legi lation Intended to Serve

Disabilities 

Intent/Purpose/ 

Brief Description

ersons with

1935 Social Security Act

P. L. 74-271 

Established federal old age benefits and grants

to states for assistance to aged and blind 

individuals, dependent and crippled children.

Extended first permanent authorization for the

federal Vocational Rehabilitation Program, 

emphasizing vocational rehabilitation of 

persons with disabilities as a social 

responsibility. Title V of SSA created a 

centrally administered fund to train personnel

d

Children

ic 

Independence

who work with children with disabilities. 

Elderly, Blind, 

Dependent,

and Cripple

Employment

and Econom

1950

Disabled 

Independence

Social Security

Amendments

P. L. 81-734 

Extended federal/state public assistance 

programs to the permanently and totally

disabled. 

Permanently

and Totally

Economic 

1954 Social Security

Amendments

P. L. 83-761 

Established the first operating Social Security

disability program under Title II provisions fo

SSDI monthly disability insurance payments to

workers with disabilities and their eligible

dependents. 

r

e

Workers with

Disabilities/

Dependents 

Employment 

and Economic 

Independenc

1956 Social Security

Amendments 

P. L. 84-880 

Workers with

Disabilities/ 

50+ years 

Acute Medical 

Care and 

Economic 

Independence

Created the Social Security Disability

Insurance Program (SSDI) for workers with 

disabilities aged 50–64. 

1960 Social Security at workers with Workers with Equality of 

Amendments 

P. L. 86-778 

Eliminated the restriction th

disabilities receiving SSDI benefits had to be

aged 50+. 

Disabilities/ 

All Ages 

Opportunity

Employment

and Economic 

Ind. 

1963 Maternal and Child

Health and Mental 

Retardation Planning

Amendments 

P. L. 88-156

bling 

Children w/

Chronic/ 

Disabling 

Conditions 

Care 

Expanded Title V eligibility to include young 

persons with/at risk of chronic and disa

conditions 

Acute Medical 

Social Security

Amendments 

P. L. 89-97 

r medical assistance 

with 

Workers with

Disabilities 

Persons of 

Low Income

Acute 

Medical Care

CommunityBased LTC 

Established Title XVIII (Medicare) and Title XIX

(Medicaid) providing hospital and medical 

insurance protection to workers with disabilities

and funding to states fo

programs for the poor, including persons 

disabilities. 

Persons with

Disabilities 

1965 

. eligible 

Equality of 

Opportunity

P. L. 101-508 Medicaid-eligible persons to receive equal care

to that available to the general population

Medicaid 

1965 Older Americans Act 

P. L. 106-501 

Established Administration on Aging (AoA) 

at DHHS, responsible for funding and 

coordination of community-based services for 

elders, their families and caregivers via Area

Agencies on Aging (AAA). 

Elders; 60 yrs.+ CommunityBased LTC 

169 
YR 

Enact Title

Intent/Purpose/ 

Brief Description

Target

Population(s) Intervention(s)

1967 Social Security

Amendments of 1967 

P. L. 90-248

Medicaid/EPSDT mandate for Children under 

the age of 21 years. States given optio

provide services under EPSDT not covered i

state plan. Effective 1970: mandatory co

of home health services to those entitled to 

SNF level services. Permitted Medicaid 

beneficiaries to use providers of choice. 

n to

n

verage 

ns

s 

Children <21 

years Perso

with Disabilitie

Elders 

Equality of 

Opportunity

Acute 

Medical Care

CommunityBased LTC 

1970 Developmental 

Disabilities Services 

and Construction 

Amendments of 1970 

P. L. 91-517 

Persons with

Developmental

Disabilities 

Equality of 

Opportunity

Provided first legal definition of developmental 

disabilities. Established broad responsibilities 

for state planning and advisory councils to plan 

and implement comprehensive services for 

persons with developmental disabilities. Also

authorized grants to support interdisciplinary 

training of personnel involved in providing 

services to persons with developmental

disabilities. 

1971 e

P. L. 92-223 

grams

to be certified as intermediate care facilities, 

requiring active treatment, funded by Medicaid. 

(Optional State Coverage) 

Persons 

with Mental

Retardation 

Opportunity

Amendments to Titl

XIX of the Social 

Security Act

Authorized public mental retardation pro Equality of 

1972 Social Security

Amendments of 197

P. L. 92-603

2

the

dult populations. 

ished 

CommunityBased LTC 

Economic 

Independence

Repealed existing public assistance programs

and replaced them with a new Title XVI 

program— Supplemental Security Income 

(SSI)—authorizing national cash benefits for 

aged, blind, and disabled individuals. Also 

authorized a new assistance program for 

children with disabilities or blindness under

age of 18, comparable to a

Auto extension of Medicaid to SSI eligible. 

Optional coverage of Children < 21 years in

psychiatric hospitals. 209(b) option establ

on 1972 eligibility criteria. 

Children and 

Adults with 

Disabilities 

Acute 

Medical Care

1973 Rehabilitation Act 

of 1973 

f

l rehabilitation programs. Established 

VI

ng 

sons with disabilities when 

ent

al 

.

Allowed SSI eligibles to return to work at state 

option—Section 1619. 

Persons with

Disabilities 

Equality of 

Opportunity

t

ic 

Independence

P. L. 93-112 

Revamp of state formulas for grant support o

vocationa

priority of serving persons w/ severe 

disabilities. Changed Vocation Rehabilitation 

Act to Rehabilitation Act. Established Title

civil rights protection for persons with 

disabilities, including Section 504, prohibiti

discrimination of per

granted federal funds. Enhanced involvem

of consumer in development of the Individu

Written Rehabilitation Program (IWRP)

Employmen

and Econom

1975 Developmental 

Disabilities 

Assistance and Bill 

of Rights Act 

P. L. 94-103

Created a “bill of rights” for persons with 

developmental disabilities; funded services 

and added new funding authority for university

affiliated facilities; and established state 

protection and advocacy organizations. 

Persons with

Developmental

Disabilities 

Equality of 

Opportunity

170 
YR 

Enact Title

Intent/Purpose/ 

Brief Description

Target

Population(s) Intervention(s)

1978 Rehabilitation,

Comprehensive

Services and

Developme

Disabilities 

ntal 

Amendments 

P. L. 95-602

nd new

ility in 

of

ight to 

tion in the least restrictive environment. 

th

tal

s 

CommunityBased LTC 

Employment 

and Economic 

Independence

Established the national Independent Living

(IL) program by adding Title VII to the 

Rehabilitation Act. Established the National

Institute of Handicapped Research, the 

National Council of the Handicapped, a

programs of recreation and employment. 

Updated the term of developmental disab

terms of function and clarified the functions

university affiliated programs. Mandate for 

persons with developmental disabilities r

appropriate treatment, services, and 

habilita

Persons with

Disabilities 

Persons wi

Developmen

Disabilitie

Equality of 

Opportunity

Social Security Ac

Amendments 

P. L. 96-265 

1980 t 

Omnibus

Reconciliation Act 

eriod. 

Employment 

and Economic 

Independence

P. L. 96-499 

Authorized cash payments (Section 1619 (a))

and continued Medicaid eligibility (Section

1619 (b)) for SSI recipients engaged in 

substantial gainful activity for three-year p

Medicare home health broadened. 

Workers with

Disabilities 

Persons with

Disabilities 

CommunityBased LTC 

1981 dget 

Reconciliation Act 

P. L. 97-35 

le

e

Children with 

Special Health 

Care Needs 

Persons with

Disabilities 

Omnibus Bu Consolidated six Title V programs into sing

block authority—Maternal and Child Health,

including needs of children with special health

care needs. Also converted the existing Titl

XX program into Social Services Block Grant, 

authorizing the Sec’y of HHS to grant “home

and community-based” waivers, including 

personal care assistance. 

Low Income CommunityBased LTC 

1982 Tax Equity and

Fiscal Responsibility

Act (TEFRA) of 1982 

e

Families of 

Children with 

Disabilities with

CommunityBased LTC 

Acute 

P. L. 97-248

Permitted states to cover home care services

for certain children with disabilities whos

family income and resources exceeded

eligibility criteria under Medicaid. (Katie 

Beckett) Allowed states to impose costsharing. 

Income Medical Care

1984 Rehabilitation Act 

f 1984 

1

ent federal agency within the DOE. 

Persons with

Disabilities 

Equality of 

Amendments o Opportunity

P. L. 98-22

National Council on Disability became an

independ

Also required states to establish a Client 

Assistance Project (CAP). Helen Keller 

National Center for Deaf-Blind Youth and 

Adults established. 

1984 Deficit Reduction Act emonstration of the S/HMO 

es 

Acute 

of 1984 e

P. L. 98-369 

Mandated a d

concept, including evaluation results. 

Medicare 

Beneficiari Medical Car

CommunityBased LTC 

171 
YR 

Enact Title

Intent/Purpose/ 

Brief Description

Target

Population(s) Intervention(s)

1985 Consolidated

Omnibus Budge

Reconc

1985 

t

iliation Act of 

P. L. 99-272 

ment

parable 

ith developmental

nd 

n

VentilatorDependent 

Children

Authorized states to cover case manage

services on less than statewide or com

basis to target populations under Medicaid. 

Expanded the definition of habilitation for 

HCBS to persons w

disabilities to allow for pre-vocational a

supported employment for previously

institutionalized individuals and authorized 

states to cover ventilator-dependent childre

under the waiver program if they would 

otherwise require continued inpatient level 

care. 

Persons with

Disabilities 

CommunityBased LTC 

1986 Education of the 

Handicapped Act 

Amendments 

P. L. 99-457

Established new grant program for states to 

develop an early intervention system for infants 

and toddlers with disabilities and their families.

Offered states incentives for provision of 

preschool programs for children with 

disabilities, aged 3–5 years. 

Children with 

Disabilities 

(0–5 years) 

and their 

Families 

Community

Based LTC

-

1986 Rehabilitation Act poses of the Act including 

r the 

y 

with CommunityAmendments of 1986 

P. L. 99-506

Broadened the pur

supported employment services and 

rehabilitation, particularly for persons with

severe disabilities. Required consumer 

controlled boards in Centers for Independent

Living (CILs) and states to establish State

Independent Living Councils to provide fo

development and expansion of IL programs 

and concepts on a state-wide basis through 

five-year plans. Specified states responsibilit

to plan for individuals transitioning from school 

to work. Extended habilitation services 

expanded beyond MR/DD populations. 

Persons

Disabilities 

(inc. Severe) 

Based LTC 

Employment 

and Economic 

Independence

1986 Employment 

Opportunities for 

Disabled Americans 

Act

P. L. 99-643

I,

Workers with

Disabilities and Economic 

Independence

Made Sections 1619 (a) and (b) permanent in

the Social Security Act. Also added provisions 

for individuals to move between regular SS

Section 1619 (a) and Section 1619 (b) eligibility

status. 

Employment 

1987 Omnibus

Reconciliation Act of

1987 

P. L. 100-203 

th

Placement 

Provided for nursing home reforms, including 

requirements to eliminate inappropriate 

placement of people with mental illness, 

mental retardation, and other related 

conditions. 

Persons wi

Disabilities

In/At Risk of 

Nursing Home

1988 Medicare 

Catastrophic Ac

of 1988 

P. L. 100-360

t 

Based LTC 

Expanded Medicare coverage and extended 

financial protections to spouses of persons 

living in institutions and receiving HCBS to 

prevent spousal impoverishment. 

Medicare 

Beneficiaries 

and Spouses 

Acute 

Medical Care

Community1989

Act 

Major expansion in required services of 

Medicaid EPSDT and specified at least 30

ve 

Children with 

Special Health 

Acute 

Medical Care

nityOmnibus Budget 

Reconciliation

of 1989 

P. L. 101-239

percent of Title V funds to be used to impro

services for children with special health care

needs. 

Care Needs Commu

Based LTC 

172 
YR 

Enact Title

Intent/Purpose/ 

Brief Description

Target

Population(s) Intervention(s)

1990 Americans 

Disabilities Act 

(ADA)

P. L. 101-336

with

d

quality of 

Opportunity

National mandate for the elimination of 

discrimination against individuals with

disabilities in employment, public services, 

public accommodation, and services operate

by private entities. 

Persons with

Disabilities 

E

1990 Individuals with 

ct 

(IDEA)

uals with

most

Students with Equality of 

Disabilities 

Education A

Amendments

P. L. 101-476

Renamed the EHA to Individ

Disabilities Education Act (IDEA) and 

reauthorized programs to improve support 

services to students with disabilities,

notably in areas of transition and assistive 

technology. Least restrictive language was 

emphasized. 

Disabilities Opportunity

1990 Omnibus Budget 

Reconciliation Act of 

1990 

P. L. 101-508

Allowed “access credit” to small business

half of eligible costs for compliance with ADA.

Also established optional state coverage of 

community supported living arrangements for

persons with mental retardation and related 

conditions. Authorized second generation 

model—S/HMO II 

es for Persons with

Mental 

Retardation 

and Other 

Related 

Conditions 

Elders 

Equality of 

Opportunity

CommunityBased LTC 

1991 Civil Rights Act of

1991 

P. L. 102-166

nt 

d 

DA.

s 

Independence

Reversed numerous U.S. Supreme Court 

decisions restricting protections in employme

discrimination; authorized compensatory an

punitive damages under Title V of the 

Rehabilitation Act and Title I of the A

Persons with

Disabilitie

Employment 

and Economic 

1992 Rehabilitation Act 

Amendments of 1992 

P. L. 102-569

y

s

Plans 

Equality of 

Opportunity

CommunityBased LTC 

Employment 

and Economic 

Independence

Comprehensive revisions to the legislation 

with explicit national findings, public policy 

commitments, statutory purpose: access to

state vocational rehabilitation for most severel

disabled individuals, consumer choice and 

control in rehabilitative process, opportunitie

for career advancement. Established State 

Rehabilitation Advisory Councils (SRACs) and 

Statewide Independent Living Councils 

(SILCs); responsible for the development, 

submission, and implementation of State

for Independent Living (SPILs).

Persons with

Disabilities 

(inc. Severe)

1993 Family and Medical 

Leave Act of 1993 easons including 

Employed

Persons of 

Acute 

Medical Care

P. L. 103-3

Granted employees leave under certain 

circumstances for medical r

birth or adoption of a child and for the care of 

a child, spouse, or parent with serious health

conditions. 

12+ duration CommunityBased LTC 

1996 Developmental 

Disabilities 

Assistance and 

Bill of Rights Act 

Amendments of 1996 

P. L. 104-183

Persons with

Developmental

Disabilities 

Extended funding authority of Developmental

Disabilities Councils, Protection and Advocacy

Systems, University-Affiliated Programs and

Projects of National Significance. 

Equality of 

Opportunity

1996 Health Insurance

Portability and 

Accountability Act 

of 1996 

P. L. 104-191

,

/

Pre-Existing 

Conditions 

Among other provisions to ensure access

limits applied to pre-existing condition 

exclusions. 

All Insureds; 

inc. Persons

with

Disabilities

Acute 

Medical Care

173 
YR 

Enact Title

Intent/Purpose/ 

Brief Description

Target

Population(s) Intervention(s)

1996 Personal 

Responsibility and 

Work Opportunity

Act of 1996 

P. L. 104-193 

s. 

Receiving SSI 

Established more restrictive definition of 

disability for children in the SSI program; 

mandated changes in the evaluation process

for claims and continuing disability review

Also required predeterminations for children 

prior to the age of 18 years. 

Children with 

Disabilities 

1996 Mental Health Parity

th 

Persons with Equality of 

Act of 1996 

P. L. 104-204 

Prohibited certain insurance companies from

lifetime cap differences between mental heal

and medical treatment allowances. 

Mental Illness Opportunity

1996 Ba t Act

of 1996 

P. L. 105-33 

ildren 

s 

Acute 

Medical Care

lanced Budge Section 4913 restored Medicaid to the ch

who had lost SSI to a definitional change 

(Sullivan v. Zebley, 1990) 

Children with 

Disabilitie

1997 Balanced Budget Act Children’s Health 

 

s; continued Medicaid coverage 

for children not meeting the revised disability 

criteria; permitted states to allow workers with

disabilities with family income less than 250 

percent of poverty to buy-in to Medicaid 

paying premiums on a sliding scale of income; 

eliminated the requirement of prior 

institutionalization for rehabilitation services 

provided for in Medicaid HCBS waivers; 

directed a study of EPSDT; and permitted 

states to mandate adult populations into 

Managed Care by amendment to state plans 

(as opposed to waivers). Exempted 

populations included SSI eligible children, 

certain foster care and adopted children, and

certain Native Americans. Called for a study of 

special challenges to serving children with

special health care needs and chronic 

conditions in Medicaid Managed Care. 

Required a report on the integration and 

transition of S/HMO into Medicare. Significant 

amendments to Medicare. 

Low Income

nd 

ilies

ith

Disabilities 

Children with 

Special Health 

Care Needs/ 

Chronic 

Conditions. 

Certain Foster 

Care, Adopted,

and Native 

Americans 

Workers with

Disabilities 

Equality of 

nity

Employment 

and Economic 

Independence

of 1997 

P.L. 105-133 

Established the State

Insurance Plan (SCHIP) to expand coverage

to low-income children not then eligible for 

Medicaid. In addition, authorized the SSA to

use adult criteria for childhood SSI recipients 

turning 18 year

Children a

Adults/Fam

Persons w

Opportu

Acute 

Medical Care

CommunityBased LTC 

1998 Workforce 

Investment Act (WIA) 

P. L. 105-220

Consolidated several employment and training 

programs into statewide systems of workforce 

development partnerships, including the 

Rehabilitation Act. Consumer choice is 

emphasized and the SRACs are renamed to 

the State Rehabilitation Council with expanded 

responsibilities to work with the state agency in 

joint development of and collaboration of state 

goals and priorities. 

Persons with

Developmental

Disabilities 

Equality of 

Opportunity

Employment 

and Economic 

Independence

1999 Ticket to Work and

Work Incentives 

Improvement Act 

(TWWIIA)

P. L. 106-170

Established to provide SSDI and SSI 

beneficiaries with a “ticket” for vocational 

rehabilitation services, employment services, 

and other support services from an 

employment network of their choice. Also 

included provisions to eliminate disincentives

to employment in Social Security and Medicaid 

law.

Persons with

Disabilities 

Receiving SSI 

and SSDI 

Employment 

and Economic 

Independence

174 
YR 

Enact Title

Intent/Purpose/ 

Brief Description

Target

Population(s) Intervention(s)

1999 Supreme Court 

Olmstead Decision

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 

Administration announced New Freedom 

Initiative in response to decision. Interagency 

identification of barriers and funding to states. 

Persons with

Disabilities 

2000 Older American Act 

Amendments of 2000 

P. L. 106-501

Reauthorization of the Older Americans Act 

(OAA), including R&D programs and the 

National Family Caregiver Support Act, 

designed to provide respite and support 

services to families caring for ill and disabled 

relatives. White House Conference on Aging 

to be held by 2005. 

Elders/Families

Persons with

Disabilities/ 

Families 

CommunityBased LTC 

2003 Medicare 

Prescription Drug, 

Improvement 

Modernization Act 

P. L. 108-173

Amended the Social Security Act to provide

for a voluntary program of prescription drug 

coverage and other Medicare related 

amendments. 

Medicare 

eligibles 

Acute 

Medical Care

CommunityBased LTC 

References: www.findlaw.com

www.ppsv.com

www.thomas.loc.gov

www.gpoaccess.gov

www.cms.gov

www.ssa.gov 

175 
176 
Appendix I.

O

Americ s, inc l

values. These ms enacted by 

the executive, judicial, and legislative branches of government. Below is a brief summary of 

re; or

D. Employment and economic independence. 

The Re bilita

protect the righ Section 504 of the Rehabilitation Act states that 

“No oth wise n

706(8) of this t isability, be excluded from participation 

in, be denied benefits of, or be subjected to discrimination under any program or activity 

IDRR) with the responsibility to provide a 

comprehensive and coordinated program of research and related activities to maximize the full 

ation, employment and independent living of individuals of all ages 

agency Committee on Disability Research at the Office of Special 

ith 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 

verview of Laws and Legislative Initiatives

an luding those with disabilities, hold equality and independence as core nationa

values are reflected in the laws, policies, regulations, and progra

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 ca

A. Equality of Opportunity 

The Rehabilitation Act of 1973 

ha tion Act (Public Law 93-112) was a major piece of legislation designed to 

ts of people with disabilities.

er qualified individual with a disability in the United States, as defined in sectio

itle, shall, solely by reason of his or her d

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 (N

inclusion and social integr

with disabilities. The Inter

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 w

177 
• Individuals with a current disability;

ncerns the obligation of state and local government 

s, was challenged in the United 

In June 1999, the Supreme Court interpreted Title II of the ADA as an obligation for all public 

• Develop and implement comprehensive plans to provide services for people in 

less restrictive settings; and 

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 

es

with the implementation of the Olmstead ruling. The New Freedom Initiative establishes and 

y

ns

• 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 co

agencies to provide equal access for individuals with disabilitie

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])

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 

• Ensure that waiting

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 localiti

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 stud

of the nation’s mental health delivery system (public and private) and make recommendatio

to improve the system. 

178 
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 heal

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 employ

th

ees and to individuals covered by selfinsured ERISA plans, as well as fully indemnified plans and plans that operate under the Federal 

individual policies, Medicare

risk contracts, Medicare Select, or subsidized versions of Medicaid. Employers who can 

ost

ted

ve

b 

e

ria. 

y

strictive within the framework of federal guidelines, while others are more lenient. 

e

income and then obtain Medicaid coverage for their health care expenditures. Medicaid Buy-In 

Employee Health Benefits Act (FEHBA). Parity does not apply to

demonstrate that provisions of the Act would result in a 1 percent or greater increase in the c

of their group health plan can claim exemption from the Act. 

The national parity requirements went into effect in January 1998, although states have enac

their own mental health and substance abuse parity provisions since 1991, and many states ha

passed parity laws more far-reaching than the federal mandate (FMHI Web site, 2003; DOL We

site, 2003). 

B. Acute Medical Car

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 crite

As an overall rule, people with disabilities must meet the Social Security criteria for disabilit

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 re

Two particularly important categories of Medicaid coverage for people with disabilities are th

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 

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.

179 
Title XIX of the Social Security Act stipulates that in order for states to receive federal Medi

funds, certain mandated services must be provided to Medicaid recipients. Currently, there are 

nearly 30 mandated Medicaid services, including hospital inpatient, outpatient and

caid 

emergency

services, physician services, rural and federally qualified health center services, laboratory and 

, and Early and Periodic Screening,

ay also provide optional 

ntal

ome health aide, habilitation and other services, further 

described under Community-Based Long-Term Care. 

ng

cost 

The Balanced Budget Act (BBA) of 1997 included several provisions relevant to people with 

managed 

nt

ions with which the state contracted for coverage of Medicaid 

enrollees. 

nce Program (SCHIP) to expand

s. Third, the BBA gave states 

to establish Program of All-Inclusive Care for the Elderly (PACE) programs to 

mmunity-based care and integrate Medicare and Medicaid funds for beneficiaries over 

ards.

Fourth, e BB her residential or day 

settings itho . Residential

habilita le service,

usually rving es residing in

x-ray services, home health care, nursing home care

Diagnosis, and Treatment (EPSDT) services for all children. States m

services, such as rehabilitative and physical therapies, prescription drugs, transportation, de

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/h

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 ensuri

that Waiver Programs do not negatively affect access or quality of services, and that they are

neutral. 1915(b) Waivers require states to conduct an independent assessment of the program. 

Balanced Budget Act of 1997

disabilities. First, the BBA gave states the option to implement mandatory Medicaid

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 independe

reviews of managed care organizat

Second, the BBA created the State Children’s Health Insura

coverage to uninsured children, including children with disabilitie

the option

provide co

the age of 55 with disabilities sufficiently serious to meet nursing home eligibility stand

th A permitted states to offer “habilitation services” in eit

, w ut the previous requirement that the recipient be institutionalized

tion combines therapies, personal care, and clinical assistance into a sing

se persons with mental retardation or other developmental disabiliti

180 
group homes or like arrangements. Day habilitation services are generally provided outsid

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 

e

s

While Med

as the Medicai

care assistance, extend

Retard (ICF

physici for u

outpati care e is covered only when furnished 

by a do r or rovider. Substance abuse treatment is 

more assets and incom

allowan s to tyBased Waivers

A nota expa

Improv ent a

benefit r Me

and catastrophic drug protection for all benefici

are pai he l 2006,

when the prescription drug coverage benefit is scheduled to be fully implemented (SSA Web 

Within 1915(c) Home- and Community-Based Waiver Services. 

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 disabilitie

prevented them from earning income.

the icare program covers acute medical care, it is not as comprehensive in coverage 

d program. For example, Medicare does not pay for prescription drugs, personal

ed nursing home care, and Intermediate Care Facilities for the Mentally 

ed s/MR). Durable medical equipment (DME) is covered only when prescribed by a

an se in the home, and respite is covered only as part of hospice care. Inpatient care, 

ent , and partial hospitalization for mental health car

cto health care professional who is a Medicare p

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 

e than had been previously allowed. States can also extend these 

ce spouses of persons receiving services under Medicaid Home and Communi

.

ble nsion of the Medicare program was the Medicare Prescription Drug, 

em nd Modernization Act of 2003. This Act provides an optional prescription drug 

fo dicare beneficiaries with incomes below 150 percent of the federal poverty level, 

aries once established premiums and deductibles 

d. T egislation established a series of interim demonstration plans until the year

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 

• 

181 
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 

medica nd be

major financial resource for the reform

report ( A W

Medica is als

attendant servi

amount urati

with federal re

• te’s

n approved by the

state; 

l care in 1999. Significant provisions included the following: 

onal care services.

• Covered services for people with cognitive impairments can include coaching to 

offer

l 

l a havioral health care for people with disabilities, the Medicaid program is the

s and studies described in the previous sections of this 

SS eb site, 2003; CMS Web site, 2003). 

id o the leading national payer for personal care services, also referred to as personal 

ces, personal assistance services, and attendant care services. States can define the 

, d on, and the scope of their covered personal care benefits, as long as they comply 

quirements that the services be

Authorized by a physician in accordance with a plan of treatment or, at the sta

option, otherwise authorized in accordance with a service pla

• 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 persona

• 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 

pers

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

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 institutiona

facilities. 

182 
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; 

t services to a specific group of people;

e

abled

ograms include respite care, 

environmental modification, personal assistance, expanded medical equipment and supplies, 

ergency response systems, transportation, homemaker 

and habilitation services. Case management is a required 

.

or

published by the National Council on Disabilities states, “Title 

XIX Waivers have significantly expanded available funding for home- and community-based 

ts do not recognize

ices

ervices

projects to further the objectives of the 

Medicaid statute. 1115 Waiver Research and Demonstration projects allow states the flexibility 

• Targe

• Limit services to a specific geographic area by waiving Section 1902(a) (1) of th

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 dis

people, people with developmental disabilities, people with traumatic brain injuries, and/or 

people with AIDS. Services often included in Waiver Pr

expanded personal care and personal em

services, adult day care, assisted living,

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 f

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

services but have not leveled the playing field; because state governmen

Home- and Community-Based Waiver Services as entitlements, waiting lists for Waiver serv

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 S

to authorize experimental, pilot, or demonstration

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. 

183 
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 fo

people with disabilities and the Cash and Counseling demonstration programs. 

r

Independence Plus 

Independence Plus is an initiative of CMS to assist states with implementation of self-directed 

ir own personal assistance

services and related supports. States are required to indicate the number of unduplicated 

nd demonstration services. Amendments to the Waivers are 

its and must include the results of an independent 

-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-effectiveness to meet 

irements and timelines can 

be cumbersome, the opportunity to develop innovative managed care systems that include 

e combination Waivers 

are the Texas STAR + PLUS program, Michigan’s Medicaid Prepaid Specialty Services 

e services, long-term care ombudsman programs, and health 

promotion) for elder Americans to remain at home and live independently in their communities. 

hed 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 

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 the

beneficiaries to receive Waiver a

required for changes to enrollment lim

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

cost neutrality to meet requirements of the 1915(c) Waiver and

requirements of the 1915(b) Waiver. Although the separate requ

home- and community-based care has appeal. Three examples of thes

(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-hom

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 establis

184 
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 

The Lifespan Respite Act of 2003 was proposed as an amendment to the Public Health Service 

Act to p vide

all ages (childr

version (S. 538

the Hou Ene

Family and M

The Family an licy intended

to directly benefit family caregivers, although not specifically caregivers of people with 

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. 

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 

ro information and fund respite care for unpaid family caregivers of individuals of 

en and adults) with special needs or disabling and chronic conditions. The Senate

) was passed unanimously and joined the House version (HR 1083) for referral to 

se rgy and Commerce Committee for consideration. 

edical Leave Act 

d Medical Leave Act (FMLA), enacted in 1993, is the first federal po

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.

185 
TWWIIA and the Balanced Budget A

Two pieces of fe WIIA of 

1999 provide the rams for 

people with disabilities wh ow states to expand

income thresholds and waiv to accrue modest savings 

s

f

• To provide wraparound coverage (such as prescription drugs, durable medical 

s 

s and maintain

their eligibility for Medicaid as earnings increase (University of Iowa Web site, 2003). 

ct of 1997—Medicaid Buy-In Programs 

deral legislation, the Balanced Budget Act of 1997 (BBA) and TW

statutory authority for states to implement Medicaid Buy-In prog

o work or want to work. The statutes also all

e asset limits as well as encourage workers

for the future from their earned income. The goals of the Medicaid Buy-In option for worker

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 o

earned income or accumulated assets; 

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 program

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 benefit

186 
Appendix J.

r

finance strategies, some states use capitation, others use 

gatekeeper models without capitation, while others use a combination of the two methods. A 

payments to compensate plans for enrolling individuals with 

ut this practice is not widespread. States also vary in terms 

e

-

d specialized managed care programs for people with 

disabilities and people who are dually eligible for Medicaid and Medicare. A comprehensive 

care programs (as of June 30, 2002) can be found 

some

with

stein 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. 

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 fo

people with disabilities. In terms of

few states use health-risk-adjusted

above-average health care needs, b

of whether programs are mandatory or voluntary for individuals with disabilities and the scop

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 develope

national summary of state Medicaid managed

on the CMS Web site. 

Specialty Managed Care Programs 

Although managed care, in general, emphasizes centralized control of acute medical care,

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

disabilities in managed care (Regen

187 
Program of All-Inclusive Care for the Elderly (PACE)

at

n of

ull

e

linical team or contracted providers, and are generally 

required to switch their primary care to a PACE physician. Thus, although there are 43 PACE 

PACE programs is much smaller than the eligible 

ls were enrolled in PACE programs 

and

4).

edical and longterm care services through the use of team-based care management. The team includes the 

kers who work together to create a care plan for the 

llees are not required to participate in an 

MSHO is a specialty managed care program offered by the Minnesota Department of Human 

e for Medicaid and Medicare

unding for this voluntary 

ss to

s

in

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 th

recognize the individual’s risk of nursing home placement, with formulas for the contributio

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 f

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 receiv

their care from a multidisciplinary PACE c

sites in 21 states, total enrollment in the

population. At the end of 2001, only 7,335 individua

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,

must be certified by their state as eligible for nursing home care (WI DHFS Web site, 200

The Partnership Program uses a capitated payment structure and integrates m

enrollee, physician, nurses, and social wor

enrollee (WI DHFS Web site, 2004). Partnership enro

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) 

Services that serves people over the age of 64 who are eligibl

(MN DHS Web site, 2004). Both Medicaid and Medicare contribute f

program, which is administered by the state to participating MCOs. MSHO provides acce

preventive, medical, long-term care, and support services. The program is operated by MCO

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

September 2003 showed that just over 5,000 individuals were enrolled in MSHO (MN DHS 

Web site, 2004). 

188 
Minnesota Disability Health Options (MnDHO)

MnDHO is a voluntary managed care program for working-age adults with physical disabi

who are either eligible

lities

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 

a commercial managed care organization (UCare) and an organization 

hip of disability advocates and providers (Axis). Axis is responsible for 

CMA is a voluntary Medicaid managed care program operated by the Neighborhood Health Plan 

al programs for specific groups of people with 

ere physical disabilities, people with AIDS, 

us

se

re

an to

to the enrollee’s specific health care needs (MA DMA Web site, 2004). This new program began 

enrollment in the spring of 2004. 

es for Children with Special Needs (HSCSN)

s.

ing

partnership between

formed by a partners

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) 

in Massachusetts. CMA has several different clinic

disabilities, including working-age adults with sev

medically fragile foster children, children with physical disabilities, and children with serio

emotional disturbances. The health plan receives special capitation payments for each of the

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 a

eligible for Medicaid or Medicaid and Medicare. SCO is designed as a coordinated health pl

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

Health Servic

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 service

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-shar

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 

189 
provider. An independent evaluation f e was equal to or better than

previous fee-for-service arrangements tration program experienced 

fi

(C

r

ally Fragile C re g C

voluntar naged care program that began as a program fo ally le

children in Columbia, South Carolina, in 1996. 

ms, using a mu isciplinary team de c wev etti r care is 

a daycare center rather than an adult day health program, and none of the children have Medicare 

pro beg s a et e sta ild w re sy m

a o chil , but i ow a ny aid- child o me

clinical criteria and has expanded to other parts of South Carolina. The team approach to care 

nts, a tric a p u ne , so rker

pharmacists, physical therapists, occupational therapists, speech therapists, a dietitian, 

sts, and h car chni O P s tha ldren

whose health improved had to be discharged gram because longer met 

program eligibility criteria. However, some of t ldren’s health de ted after discharge 

ece the t o k h FC centl

introduced a Step-Down program for graduates in 

r 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.

ound that access to car

; however, the demons

nancial losses and difficulty coordinating with other agencies serving the same children 

oulam 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 coordinato

(CCOM Web site, 2004). 

Medic hild n’s Pro ram (MF P)

MFCP is a y ma r medic fragi

The founders of MFCP modeled it after the 

PACE progra ltid to provi are. Ho er, the s ng fo

insurance coverage

nd Medicaid for f

. The

ster

gram

dren

an a

s n

partnership b

vailable to a

ween th

Medic

te’s ch

eligible

elfa

wh

ste

ets 

includes pare pedia ian, ediatric n rse practitio r, nurses cial wo s,

psychologi ome e te cians. ne of the chall

from the pro

enges MFC faced i

they no

t chi

hese chi

hat helped t

teriora

because they no longer r ived services eep them ealthy. M P re y

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 consume

190 
Appendix K. 

ary P er nc St dy S mila itie and iffe en es

Six of the preference studies were conducted in one state or large city, and one was conducted 

Samp es es m 168 (a universal sample) to 1,102 (a nationally 

ive sa ). F of stu ies w re random samples, one was a universal sam

and one was a convenien p the conveni ple in this review because 

it was the main source of inform racial and ethnic differences in consumer 

r c mer-directed care. Four of the studies restricted their sample to Medicaid 

ome- and Community-Based Waiver Services or personal assistance services; 

spite careg tudy samp moderate- or low-income fam ies who did not 

ualify for Medicaid, and the other two studies included a more heterogeneous population in 

al

ice

Summ of ref e e u i r s D r c

nationally. le siz rang fro

representat mple our the d e ple, 

ce sam le. We included

ation about 

ence sam

preferences fo onsu

recipients of H

the re iver s le consisted of il

q

terms of income or health coverage. 

Study Year 

Sample 

Size Location 

Recruitment 

Base 

Sampling 

Method 

Research 

Design

Response 

Rate 

Actu

Cho

Gibson et al. 2003 1102 Nat’l. DK DK Cross 

sectional 32% N

Desmond et al. 2001 743 Florida Personal care 

clients Random Cross 

sectional 48% N

Feinberg and Whitlatch 1998 168 CA 

Family

caregivers who 

used in-home 

respite care

Universe Cross 

sectional 81% Y

Mahoney et al. 1998 493 New York clients Random sectional 23% Personal care Cross N

Sciegaj et al. 2004 731 Boston 

Clients of CBO 

using services to

assist with ADL 

Convenience Cross 

sectional N/A N

Simon-Rusinowitz et al. 1997 491 Arkansas 

Medicaid 

personal care 

clients 

Random Cross 

sectional 34% N 

Simon-Rusinowitz et al. 20 a B r

clients n sectional 01 378 Florid HC S waive Ra dom Cross 53% N 

All of the studies inc i du ve ag 5 most included individuals with 

disabilities under the age of 65. However, the Sciegaj et al., 2004, 

racial factors included only i of the studies also included 

y di tie ne w nd ed exclusively am indiv s

pmental d ili n st xp ly io he in dividuals 

bi . F f t tud erm nders, and the family 

aregiver study targeted families caring for people with cognitive disabilities. None of the studies 

mentioned the inclusion of individuals with psychiatric disabilities. 

luded ndivi als o r the e of 6 , and

study that looked at ethnic and 

ndividuals over the age of 65. Most

individuals with ph sical sabili s. O study as co uct ong idual

with develo isab ties, a d one udy e licit ment ned t clusion of in

with cognitive disa lities ive o he s ies p itted surrogate respo

c

191 
Study Year 

Sample 

Size Age Surrogates 

CareDisabilities giver Languages 

>65 <65 Physical Develop. Cog. Psych Span. Chin.

Gibson et al. 2003 1102 x x x x x 

Desmond et al. 2001 743 x x x x x 

Feinberg and 

Whitlatch 1998 168 x x x x 

Sciegaj et al. 2004 731 x x x 

Mahoney et al. 1998 493 x x x x x 

Simon-Rusinowitz 

et al. 1997 491 x x x x 

Simon-Rusinowitz 

et al. 2001 378 x x x 

In most of the studies, the vast majo ts fem o exceptions were

l sa of rs w di i son l., 2003) nd

the Simon-Rusinowitz et al., 2001, st ith developme isabilities in Florida.

Although the Gibson et al., 2003, study respondents were diverse in gender, they were 

tly e. T e of stu siz p l/et min

the Simon-Rusinowitz et al., 1997, study in Arkansas; the Sciegaj 004, study in B

and the Mahoney et al., 1998, study in New York. Just as there was variation in the

c te o po ied a sity eop

situations and health status. The respond the Florida study uals with di

for example, reported much better health status than the communit lling elders in B

It is important to note that in the Feinber hitlatch, 1998, stu the c

receivers were majority male (53 percent), 

d g ch ill es a er’s, deme um r traum c

brain injuries. 

Study Year Female >65 Black Latino Asian Other Alone

Health tus 

Fair/Poor 

rity of responden

sabilities living

udy of adults w

were

n the comm

ale. The tw

unity (Gib

ntal d

the nationa mple elde ith et a a

predominan whit hre the dies included able sam les of racia

et al., 2

hnic orities:

oston;

wide

s also diver

of individ

les’ living

sabilities,

demographic harac ristics f the pulations stud

ents in

, there w in p

y-dwe

dy of caregivers,

oston.

g and W are

had an average age of 67.5, and had seriously 

ebilitatin ronic ness , such s stroke, Alzheim ntia, brain t ors, o ati

White

Lived Sta

Desmond et al. 2001 80% 66% 58% 24% 12% 3% 50% 74% 

Gibson 2003 54% 81% 10% 5% 1% 6% 28% 

Mahoney et al. 1998 77% 63% 47% 31% 12% 61% 70% 

Simon-Rusinowitz et al. 1997 89% 85% 50% 48% 57% 67% 

Simon-Rusinowitz et al. 2001 54% DK 73% 22% 3% 7% 17% 

Sciegaj et al. 2004 72% 100% 27% 27% 18% 27% 74% 82% 

Feinberg and Whitlatch 1998 74% DK 77% N/A 

192 
Appendix L.

Summary of Long-Term Care Outcome Study 

None of the studies were national, but rather were concentrated in individual states: including 

ia, and Arkansas. Samples ranged from 92 to 

ith the larger studies per ication by both age (over and under 65) as well 

as program model (consumer direction vs. agency direction). Those studies that used random or 

y Year 

Sample 

Size Location Recruitment Base 

Sampling 

Method 

Research 

Design

n

Rate 

Respon

Bias 

Similarities and Differences 

California, Maryland, Michigan, Texas, Virgin

1,739, w mitting stratif

universal samples achieved fairly high response rates. 

Respo se se 

Stud

Beatty et al. 1998 92 VA 

People receiving paid 

personal assistance 

through the state

Quasiexperimental

Longitudinal 

with

comparison 

group 

DK

Benjamin and 

Matthias 2001 511 CA 

Recipients of CD inhome supportive 

services 

Random 

Cross 

Sectional with 

Comparison 

Group 

78% 

Younger, 

minorities 

m

respond 

ore likely to 

Benjamin et al. 2000 1,095 CA 

Recipients of CD inhome supportive 

services 

Random 

Cross 

Sectional with 

Comparison 

Group 

78% 

respond 

Younger, 

minorities 

more likely to 

Benjamin et al. 1999 511 CA 

Recipients of CD inhome supportive 

services 

Random 

Cross 

Sectional with 

Comparison 

Group 

78% 

Younger,

minorities 

more likely to

respond 

Doty et al. 1996 879 MD, MI 

and TX 

Older Medicaid 

recipients of personal 

care services 

DK 

Cross 

Sectional with 

Comparison DK

Groups

88%

Feinberg and 

Whitlatch 1998 168 CA 

F ar s

wh ed in e 

te

Universe ross 81% DK 

amily c

o us

egiver

-hom

respi care

C

Sectional 

Foster et al. 2003 ,73 AK C og

o r e nt

ive

Randomized, 

trol

S , pre

ost

89% tx grp, 

g

1 9

People enrolled in AK 

&C Pr ram, 9

m s. afte nrollme

Un rse Con

tudy

85% control 

and p roup

DK 

Six of the studies ded people ve ge f 65 (Beatty

included adults with disabilities under the age of 65 (Doty et al., 1996, being the 

n). Six of tud s fo d p ari ind vidua with hysical disabilities and 

chronic illnesses. Of thes e itted pro sp nts four e clud ndiv duals w

cognitive impairm an interview, and one did not mention the use 

f 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. 

inclu o r the a o et al., 1998, being the exception), 

and six also

exceptio the s ie cuse rim ly on i ls p

e, on perm xy re onde , x ed i i ith

ents who could not participate in

o

193 
Age Disabilities Languages 

Study Year 

Sample 

Size >65 <65 P Surrogates 

Carehysical Cog. Exclusions giver Span. Chin. Viet. 

Beaty et al. 1998 92 x x 

Benjamin 

and Matthias 2001 511 x x x Cog* x x x 

Benjamin et al. 2000 1,095 x x x Cog* x x x 

Benjamin et al. 1999 511 x x x Cog* x x x 

Doty et al. 1996 879 x x x 

Feinberg and 

Whitlatch 1998 168 x x x X 

Foster et al. 2003 1,739 x 

Conroy et al. 2002 77* x x x x x 

Conroy et al. Dec-02 13,589 x x x 

Conroy et al. Nov-02 138 x x x 

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 

were predominantly Caucasian. This is 

enjamin et al., studies, on the 

other hand, had strong participation rates on the part of racial/ethnic minorities. The education 

g

to have at least a high school education than older adults. 

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 

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 B

level of study participants spanned a wide range, with the general trend of younger adults bein

more likely

Study Year Female >65 White Black Latino Asian Other 

Lived 

Alone

Percent High 

School Ed. Or +

Beatty et al. 1998 46% avg. = 

42 82% 

Benjamin and >65 81% N/A 30% 24% 22% 17% 17% 36% 

Matthias 2001 

<65 57% 47% 22% 17% 6% 8% 66%

AD 77% 50% 70% 11% 9% 2% 8% 70% 64% 

Benjamin et al. 2000 

CD 70% 54% 38% 23% 20% 12% 8% 43% 51%

Fmem 74% 59% 30% 24% 24% 16% 6% 31% 43%

Benjamin et al. 1999 

Other 67% 49% 46% 22% 25% 8% 9% 53% 57% 

Doty et al. 1996 100% 

Feinberg and 

Whitlatch 1998 74% N/A 77% N/A 

>65 82% N/A 60% 34% 6% 16% 

Foster et al. 2003 

<65 68% N/A 65% 30% 6% 46% 

194 
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 

ust

ith mental health care issues). 

it a

opposed to remaining in the 

community. What is the unique set of circumstances that prompts people to make that move?

ams 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 

aturally take on,

g.

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 j

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 w

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

good thing or not?

I’d like to understand why people enter long-term care facilities as

I would like to look at liability issues. There are many small programs operating without fiscal 

intermediaries. As these progr

Counseling. And I’d like to look at risk management: what risks do consumers n

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, workin

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. 

195 
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, a

what is it costing getting it wrong (e.g., lost wages, lost opportunities, etc.). Also, regarding

woodwork effect—who are the people that are n

nd

the

ot costing anything now but would come out of 

the woodwork if resources were available? 

I’d like to see this idea expanded further in terms of feasible ways—especially nursing home

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 

I’d like a study of what the world is going to look like in 20 years. 

nd

maybe evaluate what we do. 

I would love to know where most young people with disabilities (i.e., graduates of special ed. 

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.

transitions. 

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 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 a

We should look at what, if any, are the adverse effects of Cash and Counseling. 

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. 

196 
I would like to study what individualization means to people with disabilities in a who

of areas and find ways that the general population ca

le variety

n 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 

I’d like to study uses of the Internet—how information can be sent to older adults and people 

OMB [Office of Management and Budget] and the policymakers a system that is cost-effective, 

system. 

We need to show them it is possible. 

ices if this consensus is in place. 

I would look at the efficacy of diversion. I would also look heavily at satisfaction. At the end of 

trying to provide consumer choice in a safe and cost-effective way. We need 

th control groups, that these programs are effective. 

ey

rs 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 

market pressures...strategies for social change. 

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 

safe, of quality, independence-oriented; one that is equal if not better than the existing

I’d like to determine how great the unmet needs are and how you can better manage the way 

people begin to receive serv

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?

the day, everyone is

to be able to say, wi

I’d like to get health care users (who run the disability/age spectrum) together to say what th

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 barrie

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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.). 

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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. 

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Appendix N. 

Mission of the National Council on Disability 

Overview and Purpose 

The National C

appointed by t

purpose of NC al

opportunity for all individuals with

disability and to em sabilities to achieve economic self-sufficiency, 

indepe nt li

Speci Du

The current sta following:

s,

by

d

tal

the needs of individuals with 

disabilities. 

als with disabilities, access to health care, and 

ves for individuals to seek and retain employment. 

n,

ouncil on Disability (NCD) is an independent federal agency with 15 members 

he President of the United States and confirmed by the U.S. Senate. The overall

D is to promote policies, programs, practices, and procedures that guarantee equ

 disabilities regardless of the nature or significance of the 

power individuals with di

nde ving, and inclusion and integration into all aspects of society. 

fic ties

tutory mandate of NCD includes the

• Reviewing and evaluating, on a continuing basis, policies, programs, practice

and procedures concerning individuals with disabilities conducted or assisted

federal departments and agencies, including programs established or assiste

under the Rehabilitation Act of 1973, as amended, or under the Developmen

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

• 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 individu

policies that act as disincenti

• Making recommendations to the President, Congress, the Secretary of Educatio

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. 

201 
• Providing Congress, on a continuing basis, with advice, recommendations, 

legislative proposals, and any additional information that NCD or Congress 

deems appropriate. 

bility and Rehabilitation Research on the 

ent of the programs to be carried out under the Rehabilitation Act of 

3, as amended.

• 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 

• 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 Disa

developm

197

• Providing advice to the commissioner of the Rehabilitation Services 

Administration with respect to the policies and conduct of the administration. 

202 
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. 

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