[Senate Hearing 107-179]
[From the U.S. Government Publishing Office]



                                                        S. Hrg. 107-179

LONG-TERM CARE AFTER OLMSTEAD: AGING AND DISABILITY GROUPS SEEK COMMON 
                                 GROUND

=======================================================================

                                HEARING

                               before the

                       SPECIAL COMMITTEE ON AGING
                          UNITED STATES SENATE

                      ONE HUNDRED SEVENTH CONGRESS

                             FIRST SESSION

                               __________

                             WASHINGTON, DC

                               __________

                           SEPTEMBER 24, 2001

                               __________

                           Serial No. 107-15

         Printed for the use of the Special Committee on Aging


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                       SPECIAL COMMITTEE ON AGING

                  JOHN B. BREAUX, Louisiana, Chairman
HARRY REID, Nevada                   LARRY CRAIG, Idaho, Ranking Member
HERB KOHL, Wisconsin                 CONRAD BURNS, Montana
JAMES M. JEFFORDS, Vermont           RICHARD SHELBY, Alabama
RUSSELL D. FEINGOLD, Wisconsin       RICK SANTORUM, Pennsylvania
RON WYDEN, Oregon                    SUSAN COLLINS, Maine
BLANCHE L. LINCOLN, Arkansas         MIKE ENZI, Wyoming
EVAN BAYH, Indiana                   TIM HUTCHINSON, Arkansas
THOMAS R. CARPER, Delaware           PETER G. FITZGERALD, Illinois
DEBBIE STABENOW, Michigan            JOHN ENSIGN, Nevada
JEAN CARNAHAN, Missouri              CHUCK HAGEL, Nebraska
                    Michelle Easton, Staff Director
               Lupe Wissel, Ranking Member Staff Director

                                  (ii)

  


                            C O N T E N T S

                              ----------                              
                                                                   Page
Opening Statement of Senator John Breaux.........................     1
Statement of Senator Larry E. Craig..............................     2

                                Panel I

Kathryn G. Allen, Director, Health Care, Medicaid and Private 
  Health Insurance Issues, U.S. General Accounting Office, 
  Washington, DC.................................................     3
Sara Rosenbaum, Director, George Washington University School of 
  Public Health and Health Policy, Washington, DC................    35
Jane Isaacs Lowe, Senior Program Officer, Robert Wood Johnson 
  Foundation, Washington, DC.....................................    57
Laura Brackin, Director, Louisiana Governor's Office of 
  Disability Affairs, Baton Rouge, LA............................    69

                                 (iii)

  

 
LONG-TERM CARE AFTER OLMSTEAD: AGING AND DISABILITY GROUPS SEEK COMMON 
                                 GROUND

                              ----------                              


                       MONDAY, SEPTEMBER 24, 2001

                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The committee met, pursuant to notice, at 1:02 p.m., in 
room SD-192, Dirksen Senate Office Building, Hon. John B. 
Breaux (Chairman of the Committee) presiding.
    Present: Senators Breaux and Craig.

     OPENING STATEMENT OF SENATOR JOHN B. BREAUX, CHAIRMAN

    The Chairman. The Committee on Aging will please come to 
order.
    I want to thank all of our guests who are here with us 
today for what I consider to be a most important hearing, and 
our ranking colleague, Senator Craig, for being with us as 
well.
    The events of the past 2 weeks have given all of us reason 
to think about what we believe in and what our country stands 
for. As Americans, we of course believe in personal liberty and 
freedom, but we also recognize the rule of law. As individuals, 
we are very proud of our independence and our self-reliance, 
but we are also very grateful for the comfort and support of 
our families and friends.
    As a society, of course, we also believe in the value of 
private enterprise, but we also know that Government plays a 
very important role in protecting our liberties and also 
safeguarding and helping to improve the quality of our lives. 
These traditional American values have carried us through very 
difficult times before and will do so again.
    But today we also continue the business of Congress and the 
work of this Aging Committee. These traditional values are 
especially relevant to the issues that are before the committee 
this afternoon.
    This is the third of a series of hearings that this 
committee has held in which we continue to examine the need for 
reform of our long-term care system in this country. In one 
sense, the witnesses who appear here today will help us to do 
that by interpreting law, by analyzing statistics, and by 
providing us with recommendations based on their professional 
as well as personal experiences.
    But in a deeper sense, the message that they bring us also 
reflects traditional American values. Older Americans in every 
part of our country want to prolong their independence and also 
their freedom. They want to live in familiar communities and 
surroundings and in the company of family and friends.
    To help them achieve those goals, we need to build new 
partnerships that combine the resources of private enterprise 
and of Government; and we need to remember that the functional 
limitations associated with aging are a form of disability and 
that we can draw upon the independent living skills learned by 
individuals who have developed disabilities caused by chronic 
or catastrophic illness or even mental illness.
    I would like to recognize Senator Larry Craig for any 
comments that he might have.

          OPENING STATEMENT OF SENATOR LARRY E. CRAIG

    Senator Craig. Mr. Chairman, again let me thank you for 
calling this third hearing in our series on long-term care.
    I would also like to thank the witnesses from whom we are 
about to hear for being here today to testify on long-term care 
after Olmstead, aging and disability groups seeking the kind of 
common ground that I think the chairman has just spoken to.
    Over the past months, we have examined many aspects of 
long-term care. I think we have gained an understanding of the 
immense challenges facing our system in the coming years. We 
have discovered innovative ways that States are preparing their 
systems. With this last hearing, we hope to learn from the 
experiences of the disability community so we can build a 
foundation for working together.
    People with disabilities have been receiving services in 
the home and community setting for many years. It is 
appropriate for older Americans to look to this group for 
guidance for effective ways to deliver quality care to 
individuals.
    One of the ways the disability community has been receiving 
these services is through private-public partnerships, and I am 
especially excited to hear about these types of approaches.
    Through this series of hearings, we have learned invaluable 
information about our Nation's long-term care services, and the 
chairman and I will now be working together to evaluate this 
information and looking to construct legislation to make long-
term care systems more adaptable to a changing society. That 
certainly is our goal, and to ensure accountability and high-
quality care while doing this.
    Again I want to thank the witnesses and the chairman for 
this hearing.
    Thank you, Mr. Chairman.
    The Chairman. Thank you, Senator.
    We would like to welcome our panel this afternoon. We would 
like to welcome Ms. Kathryn Allen, who is Director of Health 
Care, Medicaid and Private Health Insurance Issues, with the 
General Accounting Office; Ms. Sara Rosenbaum, who is Director 
of the George Washington University Center for Health Services 
Research and Policy here in Washington; Dr. Jane Isaacs Lowe, 
who is Senior Program Office at the Robert Wood Johnson 
Foundation at Princeton; and, from my State of Louisiana, the 
Director of the Louisiana Governor's Office of Disability 
Affairs, Ms. Laura Brackin. Thank you, Laura, particularly for 
coming up; I know that we have all had to rearrange things 
because of the circumstances in the country. And to all of you, 
we deeply appreciate your being with us and look forward to 
your testimony.
    Ms. Allen, thanks for the good work that GAO has done. I 
note that you have an over-20-page document that you have 
presented to us. I would encourage all organizations to take 
the opportunity and time to review it; it is an excellent 
summary of what has happened since Olmstead. We would ask you 
to summarize it, and please begin.

STATEMENT OF KATHRYN G. ALLEN, DIRECTOR, HEALTH CARE, MEDICAID 
 AND PRIVATE HEALTH INSURANCE ISSUES, U.S. GENERAL ACCOUNTING 
                     OFFICE, WASHINGTON, DC

    Ms. Allen. Thank you, Mr. Chairman and Senator Craig.
    It is a pleasure to be here today as you continue this 
series of hearings on long-term care, and with today's focus 
particularly exploring implications of the Supreme Court 
Olmstead decision in addition to other issues.
    What I would like to do is focus my remarks on three brief 
points--highlights of the decision itself in terms of the 
Olmstead case; an overview of current and future demand and 
financing of long-term care services in which the Olmstead 
decision will have some effect; and finally, implications of 
the decision for State long-term care programs.
    The 1999 Olmstead decision has been widely interpreted as 
actually going far beyond the specific circumstances of the 
case that was heard. This particular case involved two women 
with developmental disabilities and mental illness who were 
inpatients in a State psychiatric hospital and whose physicians 
had determined that a community-based setting would be 
appropriate for their needs.
    The Supreme Court concluded that in order to avoid 
violating Title II of the Americans with Disabilities Act, ADA, 
States would be required to provide community-based treatment 
for persons with mental disabilities when three conditions are 
present--that treatment professionals determine that such 
placement is appropriate; that the affected persons do not 
oppose such treatment; and that the treatment can be reasonably 
accommodated taking into account the resources available to the 
State and the needs of others with mental disabilities.
    Beyond the specific circumstances of this case, the 
Olmstead decision is being interpreted to extend to persons 
with physical as well as mental disabilities, to those in 
nursing homes and other institutional settings in addition to 
psychiatric hospitals, and to those who already live in the 
community but are at risk of institutionalization.
    As such, it carries broader implications for the provision 
of long-term care, not just for persons with disabilities who 
currently need services, but also for the expected changes that 
loom on our horizon.
    Without question, the approaching tidal wave of aging baby 
boomers will generate new demand for long-term care services 
that will increasingly tax our capacity, that of public and 
private resources. Although a chronic physical and mental 
disability can and does strike at any age, whether child, young 
adult or senior, the risk of developing a disability increases 
as a person ages. As a result, the number of disabled elderly 
individuals who will need care by the year 2040 is projected to 
be two to four times the current number.
    There are scores of Federal programs that support persons 
with disabilities. We counted about 70. But implications are 
most profound for Medicaid, with its open-ended commitment to 
serve eligible persons. Medicaid is now the primary public 
payer for long-term care. It paid about 44 percent of the $134 
billion spent nationwide on long-term care in 1999 for both 
institutional and home and community-based services. How 
Medicaid serves individuals with disabilities, however, varies 
widely from State to State.
    States have considerable flexibility to decide within broad 
Federal guidelines who and what services they will cover and in 
what settings. While historically, Medicaid programs have been 
viewed as being slanted toward institutional care, spending for 
home and community-based services has increased more than 
fourfold over the past decade, from $4 billion to over $18 
billion last year.
    But these are still optional services that are not 
federally required, so States can and do vary widely in terms 
of the degree to which they choose to cover these services.
    With the continuing shift to greater provision of community 
care and the reduced reliance on institutions that actually 
predated Olmstead, we need to look beyond the implications for 
Federal programs and public programs. Individuals and their 
families will also certainly be impacted. Private resources 
that include out-of-pocket spending and insurance already make 
up the second-largest share of long-term care spending, about 
40 percent. But this does not include the unspecified but high 
cost of care provided by family members and other informal 
caregivers.
    An estimated 60 percent of disabled elderly individuals 
living in their own homes and communities rely exclusively on 
their families and other unpaid sources for their care. While 
the shift from institutional to in-home and community care 
offers many benefits and advantages for persons with 
disabilities, formal or paid services most often satisfy only a 
portion of these individuals' needs, with the balance falling 
to family and other informal caregivers.
    My third and final point is that the implications of the 
Olmstead decision are still unfolding for States and their 
long-term care programs. Although the Supreme Court ruled that 
under certain circumstances, institutionally based services may 
violate the ADA, the Court also acknowledged that the community 
may not be the most appropriate setting for many individuals. 
It further recognized that States' responsibilities are not 
boundless. There are limits to what States can do given 
available resources and the obligation to provide a range of 
services for persons with disabilities.
    The ADA does not require States to fundamentally alter 
their existing programs as they make so-called reasonable 
modifications to avoid discrimination. The Olmstead decision 
therefore leaves open many questions for States and lower 
courts to resolve in determining States' obligations as to the 
nature and scope of their programs.
    To date, most States' responses to Olmstead have focused on 
preparing plans that lay out goals and actions. Because most of 
these are still works-in-progress, it is too soon to tell how 
and when they will be implemented. State programs will no doubt 
also be influenced over time by the resolution of the many 
pending lawsuits and complaints that have been filed seeking 
access to appropriate services.
    In conclusion, Mr. Chairman, we face a growing need to 
anticipate and plan for the inevitable increase in demand for 
long-term care in settings that offer both varying options and 
choices. This increased demand will emanate not just from the 
Olmstead decision but also from the needs and preferences of 
the baby boom generation. Finding ways to develop and finance 
additional service capacity that meets needs, allows choice, 
and leverages limited public and private resources will be the 
ongoing challenge for this generation, families, and Federal, 
State, and local governments.
    Mr. Chairman, this concludes my prepared remarks.
    The Chairman. Thank you very much, Ms. Allen.
    Ms. Rosenbaum.
    [The prepared statement of Ms. Allen follows:]
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   STATEMENT OF SARA ROSENBAUM, DIRECTOR, GEORGE WASHINGTON 
     UNIVERSITY SCHOOL OF PUBLIC HEALTH AND HEALTH POLICY, 
                         WASHINGTON, DC

    Ms. Rosenbaum. Thank you very much, Mr. Chairman and 
Senator Craig.
    The George Washington University School of Public Health 
greatly appreciates this opportunity to testify before you 
today. We have been asked to present testimony on a special 
study that we have conducted over the past year which examines 
in detail, on an anonymous basis, the Olmstead complaints, that 
is, complaints filed with the Office for Civil Rights at HHS 
alleging a failure to provide care in the most integrated 
setting under Title II.
    With the support of the Center for Health Care Strategies, 
part of the Robert Wood Johnson Foundation, we have been 
analyzing these complaints for about 12 months. We have 
analyzed the 334 complaints that have been filed since 1996, 
and I am going to summarize the findings from the analysis; you 
have the full analysis, of course, with you.
    The Chairman. Excuse me. You said since 1996, so that is 
prior to Olmstead?
    Ms. Rosenbaum. Yes. The Olmstead case, of course, 
originated well before the year that the Supreme Court actually 
handed down its decision, so there have been most integrated 
setting complaints filed under the ADA for a number of years; 
and before that, of course, under 504 of the Rehabilitation 
Act, many of these claims also would have been germane.
    In brief, our review of the complaints, which should not as 
a body be understood to be representative of all people who 
might be medically unjustifiably institutionalized--we do not 
know if they are representative of that whole group of 
Americans; nonetheless we think these complaints shed a lot of 
light on the situations facing people who believe they are in 
this situation--our review of the complaints reveals certain 
distinct patterns which we think will be extremely helpful to 
the committee as it begins to fashion recommendations.
    The first observation is that this is a nationwide problem, 
not confined to any one State or any one region of the country. 
It is all over. The number of complaints by region varies, but 
it is safe to say that there is not a State that is not facing 
this issue, and it affects all residents of the United States.
    The age range of the complainants is predominantly focused 
on adults ages 22 to 64. This is where many of the complainants 
are. There is a fair number of children. There is a smaller 
number of persons over age 65 who filed complaints; we believe 
that that is an artifice of the complaint process and is not 
reflective of the lack of a problem related to medically 
unjustifiable institutionalization among elderly people.
    Residential status of the complainants, as Ms. Allen noted, 
is a broad decision, and indeed, 30 percent of all the 
complaints and 40 percent of the children's complaints involved 
residents of the community, not residents of institutions. So 
when you think about this problem, you need to think about it 
across residential status.
    Within the group of people who are in the community, almost 
two-thirds are living with their families and clearly feeling 
under threat over the ability to maintain a family residential 
status. Thirty-five percent are struggling to live on their own 
or in another setting in the community, but we were quite 
struck by the fact that so many do live with their families--an 
indication that something is wrong with the mechanism for 
providing community supports if you feel this unable to 
maintain a community residential status even with your own 
family.
    Within the group of institutionalized beneficiaries or 
complainants, most are in nursing facilities overall; a fair 
number, one-quarter, are in psychiatric facilities. Among 
children, however, the picture is quite different. Among 
children, a fair number--we simply could not tell where they 
were, but there appeared to be a fair number of complaints from 
long-term hospitals, from residential treatment facilities, 
from the kinds of facilities that children with profound mental 
and emotional needs may be in for special education purposes.
    In the case of the diagnosis--and we think this may be some 
of the most helpful information to you--a physical disability 
diagnosis is the overwhelmingly common diagnosis. There is a 
very substantial presence of mental diagnoses, mental 
retardation, mental illness, but if I had to draw a picture for 
you today of the typical person filing a complaint alleging 
unjustifiable institutionalization, it would be an adult with 
very significant physical disabilities. In the case of 
children, however, again, the presence of dual and trebly 
diagnosed children is very high. Mental illness, mental 
retardation, developmental disabilities, in combination with a 
physical disability, are much more common.
    The service needs that people seek should be no surprise. 
The two biggest service needs are a place to live and health 
services in the home, and this I think is consistent with the 
nature of who is complaining. People want to have a place to 
live that is not an institution, they obviously cannot secure 
it, and they need in-home services to be able to achieve that 
result.
    This is a very rapid statistical overview of the findings. 
Many of the letters are just simply heartbreaking in the 
description of the predicaments that people find themselves in. 
As you think through a remedy for this issue, it is clear that 
it extends well beyond the Medicaid program in its current 
form; it extends into housing, social services, education, and 
other supports needed to thrive in a community.
    Thank you very much.
    The Chairman. Thank you very much, Professor Rosenbaum.
    Next, Ms. Lowe.
    [The prepared statement of Ms. Rosenbaum follows:]
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  STATEMENT  OF JANE  ISAACS  LOWE,  SENIOR  PROGRAM OFFICER, 
         ROBERT WOOD JOHNSON FOUNDATION, WASHINGTON, DC

    Dr. Lowe. Mr. Chairman and Senator Craig, good afternoon. 
Thank you for inviting me to testify this afternoon on the work 
the Robert Wood Johnson Foundation has done to improve long-
term care in America.
    I am pleased to share some of the lessons we have learned 
from our grant-making in this area. But let me begin first by 
putting a human face on this complex issue by telling you about 
Mrs. K, who lived on a farm by herself in rural Illinois.
    At age 85, Mrs. K suffered from hearing and vision loss and 
was increasingly confined to a wheelchair due to severe 
arthritis. An Illinois home care specialist visited several 
times a week, as did several of her children, but she was 
slowly losing the ability to live independently without help. 
Although she resisted giving up her home, she was amenable to 
living in a senior apartment complex; however, the nearest 
facility was far from her home town and also beyond her 
financial means. She feared that it was just a matter of time 
before she would have to go to a nursing home.
    Mrs. K was lucky. An affordable assisted living facility 
was built 10 miles from her home as a result of the 
Foundation's Coming Home Program, a national program designed 
to increase the number of affordable assisted living programs 
in rural America.
    Mrs. K was one of the first seniors to qualify for 
residence in Cache Valley, located in a town of 550 people. 
Today she has her own apartment, filled with her furniture, 
receives meals and help with dressing, bathing and medications, 
and as a result has friends, her independence, and help when 
she needs it.
    There are many people like Mrs. K who are living in rural, 
suburban, and urban areas. They are alone and isolated, living 
with chronic illnesses and limited resources and, like Mrs. K, 
they need affordable housing and service options.
    Mrs. K's story is just one example of our work to develop 
long-term care programs for vulnerable and frail older persons 
and people with disabilities. The Robert Wood Johnson 
Foundation's work in this area is funded as part of our goal to 
improve care and support for people with chronic illness. This 
has been one of our principal programming goals since 1991.
    Since that time, the Foundation has awarded more than 3,000 
grants totaling close to $1 billion to improve long-term care 
and care for people with chronic illness. Through our grant-
making, we test new ideas and develop new models, and these 
innovations necessarily fall short of broad-scale change, but 
with careful interpretation provide valuable lessons.
    The three most salient lessons we have learned from our 
grant-making are as follows. First, consumers and/or their 
families must be involved in decisions about their care. 
Second, more alternatives to institutional long-term care must 
be created. And third, financing must be more flexible in order 
to support these options.
    Let me talk for just a moment about consumer-directed care. 
One very promising model that the Foundation has supported in 
the past decade is consumer-directed care or self-
determination. This model is based on the premise that control 
over the nature, extent, and duration of services and supports 
that are available to people with disabilities and older 
persons should rest with the person receiving those services 
and their families.
    Beginning with our work with Monodnock Development Services 
in Keene, NH, we supported several iterations of the self-
determination model--Self-Determination for People with 
Developmental Disabilities, a 19-state replication of the 
Monodnock model; Independent Choices, a consumer-directed 
program for older adults; and Cash and Counseling, a Medicaid 
consumer-directed demonstration for older adults and persons 
with disabilities.
    Our work on these programs suggests several lessons. First, 
when consumers, to the extent they desire, control 
decisionmaking about their care, they experience improved 
quality of life, greater self-confidence and personal autonomy, 
and improved access to services.
    Second, implementation of this model and its values 
requires a serious commitment to change to ensure that 
decisionmaking rests with consumers and that services meet 
their needs.
    Third, supportive services are necessary to promote 
independence and are integral to this effort.
    The second lesson we have learned is about the alternatives 
to institutional care. Today the only widely available service 
for most Americans with long-term care needs is nursing home 
care. As a foundation, we have worked to expand the number of 
home and community-based long-term care options for all 
Americans, most especially low-income seniors and disabled 
adults.
    Linking housing with services has been one successful model 
that we have invested in. Two Robert Wood Johnson Foundation 
programs for low-income seniors--No Place Like Home and Coming 
Home--have worked extensively in this area.
    Another grant to the Corporation for Supportive Housing 
resulted in the development of housing-based integrated service 
models for low-income adults with chronic physical and mental 
illnesses.
    For many people, receiving supportive services in their 
housing environment can make the difference between 
institutionalization in a nursing home and aging in one's own 
apartment or home--what we in the field call ``aging in 
place''--and can also reduce hopelessness for chronically ill 
and disabled adults.
    We have also supported innovations in community-based 
services. Three examples of this work include Building Health 
Systems for People With Chronic Illness; the Program of All-
inclusive Care for the Elderly, or PACE; and Partners in 
Caregiving. Building Health Systems focused on the difficult 
challenges of overcoming fragmentation of services, financing 
barriers, and the prevalence of episodic care through 24 
different programs.
    The PACE program in contrast replicated a single successful 
model that integrates Medicare and Medicaid financing streams 
and acute and long-term care services within a single delivery 
system.
    In addition, our support for the Partners in Caregiving 
Program ensures that adult day centers help family caregivers 
by providing crucial services during work hours when many 
family members are not able to look after their loved ones.
    Lesson three relates to the financing. Any discussion of 
long-term care reform would be incomplete without addressing 
financing questions.
    Financial support for a variety of services is obviously 
critical to the viability of the service delivery system and 
other models we have funded. However, demonstration programs on 
their own cannot solve the underlying questions about the 
sources and nature of financing for long-term care services.
    At the same time, our demonstration experiences do suggest 
lessons about the use of long-term care dollars. For example, 
we have learned that funding sources should cover a variety of 
services and a range of medical and social services in order to 
make consumer choice a reality.
    We have also learned that the ability to leverage multiple 
funding sources, such as creating interrelationships between 
housing and supportive services, best enables older adults and 
adults with disabilities to remain in the community.
    As we move forward, the Foundation's program efforts will 
focus on assisting family caregivers and strengthening the paid 
work force, encouraging communities to design, build, and 
strengthen their capacity for providing long-term care 
services, and promoting changes in public policy to increase 
consumer choice and to improve the coordination and financing 
of supportive services.
    The Robert Wood Johnson Foundation recognizes that 
reforming the system must be complemented by a national effort 
to improve the health of older members of our society. To 
encourage this work, the Foundation is supporting numerous 
efforts, including a program to increase physical activity 
among mid-level and older adults, and also to improve clinical 
services for people with chronic illness and improve public 
awareness of issues related to chronic illness and disability.
    We also hope to assist Federal and State policymakers as 
they consider a variety of issues through improved information 
and resources, through technical assistance, and through the 
development of policy options. Our work suggests that long-term 
care reform will need to incorporate the Federal, State and 
community perspectives and foster public-private partnerships 
in order to find solutions to the most pressing issues 
confronting vulnerable older adults and their caregivers.
    The several decades of experience in this field demonstrate 
the formidable challenges of improving America's long-term care 
system. Our experiences also highlight many opportunities and 
provide significant lessons for the nation as we embrace this 
challenge. We will need to develop delivery systems, service 
capacity, and financing streams that provide vulnerable and 
frail elders and people with disabilities with choices about 
how to live their lives and receive the care they need.
    We will need to pay particular attention to supportive 
services and housing issues, which determine whether those 
individuals can maintain the autonomy and independence they 
desire.
    The Foundation will continue to work with providers, public 
agencies, consumers, researchers and others to refine the 
models we have, test new ideas, and build capacity within our 
communities and our nation to meet these challenges. We would 
be happy to connect you with projects that we support across 
the country that are grappling with these issues.
    I thank you for your attention and look forward to your 
questions.
    The Chairman. Thank you very much, Dr. Lowe.
    Next, Dr. Laura Brackin from Louisiana.
    [The prepared statement of Dr. Lowe follows:]
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STATEMENT  OF LAURA  BRACKIN,  DIRECTOR,  LOUISIANA GOVERNOR'S 
         OFFICE OF DISABILITY AFFAIRS, BATON ROUGE, LA

    Ms. Brackin. Mr. Chairman, Senator Craig, my name is Laura 
Brackin, and I am Executive Director of the Governor's Office 
of Disability Affairs in the State of Louisiana.
    I thank you for the opportunity to appear before you today 
and provide testimony regarding long-term care reform. My role 
here today is to share with you a State's perspective on long-
term care reform, including the impact of Olmstead and 
Barthelemy, and the process of partnership-building and 
solution-sharing between the aging and disability communities 
in Louisiana.
    The 1999 U.S. Supreme Court decision, Olmstead v. L.C., had 
a dual effect on the State of Louisiana. First, it became the 
legal basis for Louisiana's version of Olmstead, which is 
Barthelemy v. Department of Health and Hospitals. Second, it 
was the central force that led to a partnership between the 
aging and disability communities in the State of Louisiana.
    In April of 2000, the Advocacy Center, which is the State's 
protection and advocacy system, filed a class action lawsuit 
which we refer to as ``Barthelemy.'' This lawsuit was filed on 
behalf of persons in nursing homes or at imminent risk of being 
placed in nursing homes. The main provisions of the lawsuit, 
which are included in Attachment A of my written testimony, are 
designed to increase the options for community services, ensure 
that individuals are informed of their options and that 
professionals are trained regarding the availability of 
community services.
    The implementation of the provisions in the lawsuit will 
form some of the initial action steps of long-term care reform 
in Louisiana.
    During the time that the Barthelemy lawsuit was being 
negotiated, Olmstead was creating action at both the State 
department level and the grassroots level. On July 26, 2000, at 
the request of the Office of Civil Rights, the Louisiana 
Department of Health and Hospitals held a meeting between DHH 
officials, consumers, family members, advocates, and other 
stakeholders. Unsure as to whether DHH would proceed with the 
development of an Olmstead plan, aging and disability advocates 
held a meeting of their own in August to discuss common ground. 
It was there that Olmstead became the catalyst in forming a 
partnership between the aging and disability communities.
    Aging and disability advocates realized that they had 
similar needs, that they were fighting for the same pots of 
money, and that they would be a greater force if they were 
united. They formed a group called the Louisiana People's 
Olmstead Planning Group, which was called LAPOP, although I 
must say they hate the name and have since changed it to LADAP, 
Louisiana's Disability and Aging Partnership.
    The intention was to develop a ``people's plan'' since they 
were unsure as to whether or not the State was going to proceed 
with an Olmstead plan. It was co-chaired by a representative of 
the developmental disabilities community and a representative 
of the aging community. Strong efforts were placed on ensuring 
that the members of the adult disability community and the 
mental health community were also involved as part of their 
steering committee.
    This was a very strong and positive collaborative effort, 
because not only for the first time were the developmental 
disability community and the aging community working on the 
same goals, but all four disability groups were at the same 
table, being equal decisionmakers in the direction of an 
Olmstead plan for Louisiana.
    In January of 2001, the LAPOP group determined that 
legislation supporting the development of their ``people's 
plan'' would help to ensure effective implementation of the 
plan. Therefore, they worked collaboratively with legislators, 
the Department of Health and Hospitals, the Governor's Office 
of Disability Affairs, and numerous disability and aging 
organizations to develop and seek passage of Senate Bill 855. 
This bill was signed into law by Governor Mike Foster and is 
now Act 1147.
    Act 1147 creates the Disability Services and Support 
Systems Planning Group, which is led by a consumer task force. 
It is comprised of numerous aging and disability consumers, 
family members, advocates, State agencies, and other interested 
individuals, and is now the entity responsible for the 
development of a plan for long-term care reform in the State of 
Louisiana.
    On a national level, Olmstead, the President's Executive 
Order, the systems change grants, and other Federal directives 
were some of the innovative initial steps in establishing 
Federal and State environments which were conducive to long-
term care change.
    On a State level, implementation of the provisions of the 
Barthelemy lawsuit will function as a change agent for future 
reform of long-term care in Louisiana.
    There are several other factors, though, which will force 
our long-term care system to change. The rapid growth in the 
aging population, including a cohort, namely the baby boomers, 
who may not accept institutionalization as a prerequisite for 
receiving long-term support and services, will create a greater 
demand for long-term care services, including greater demands 
upon State and Federal budgets and on family members.
    Reduction in birth rates, greater mobility of working 
Americans, and the increased participation of women in the work 
force will decrease the capacity for family members to provide 
care for family members who are aging or disabled.
    Another factor is the new, reinvigorated, and politically 
potent coalitions between aging advocates and disability 
advocates who have been brought together and fueled by 
Olmstead.
    Cross-fertilization between the fields of disability and 
aging are evolving such that advocates for the aging will begin 
demanding the same civil rights, community integration, and 
consumer-directed supports for older adults with disabilities 
as advocates and self-advocates have been demanding for younger 
adults with disabilities.
    Our society is rapidly evolving such that consumers, family 
members, and advocate are no longer buying into the notion of 
predetermined categories for disability or aging. Instead, they 
are banding together and working toward a universal system for 
all people with disabilities regardless of age.
    One of the most important mechanisms for long-term care 
change will be the development of partnerships such as in the 
Displaced Services and Support System Planning Group in the 
State of Louisiana. Partnerships also need to be formed between 
State agencies that provide services, partnerships between 
State and Federal Government, public and private partnerships, 
but most importantly, partnerships between States and 
consumers, family members, and advocates. And these 
partnerships need to include collaboration on grants, policies 
and procedures, program development and strategic planning.
    We have an ingrained system, and therefore, incentives are 
needed to change that system. I would like to share with you a 
couple of short-term or quick fixes that I believe may help us 
in moving toward long-term care reform.
    One is that regulations need to be changed so that family 
members can be reimbursed for care. There needs to be 
flexibility in the use of long-term care dollars so that family 
members can do what they are able to do for other family 
members who are aging or disabled, but they can get the support 
in the way that they need it most. Costs will be controlled 
because they are not going to be reimbursed for unnecessary 24-
hour care.
    States must be allowed to bundle Medicare and Medicaid 
services for a definable population across all age groups and 
use the money as a research and demonstration waiver to allow 
more flexibility. It is anticipated that this will be cost-
neutral for Louisiana and also cost-neutral for the Federal 
Government.
    We must enhance the Federal match rate for home and 
community-based services similar to what was done with the 
Family Opportunity Act, by either removing nursing home care as 
a required entitlement benefit under Medicaid and making long-
term care services the required benefit so that States have 
some flexibility in how and where to deliver long-term care 
services, or make home and community-based long-term care 
services a required benefit under Medicaid to be on the same 
level as nursing homes. Another option that would put them on 
the same footing would be the passage of MiCASSA.
    We must provide Federal dollars to assist poor States with 
excess institutional capacity to buy back certificates of need 
for surplus nursing home beds. This will produce cost savings 
in States with too many nursing home beds and should provide 
nursing homes with the resources for them to retool. Bed 
buybacks and bed-banking could be used to encourage the 
retooling of nursing homes so they would move toward more home 
and community-based care.
    We must change Federal laws and regulations to allow for 
Cash and Counseling programs.
    We must de-link eligibility requirements for home and 
community-based services from eligibility requirements for 
institutional care. I would like to point out that it is easier 
to get into an institution than it is to receive home and 
community-based care. Eligibility determination requires that 
you describe an individual's deficits as opposed to his 
strengths and weaknesses. This forces an approach of viewing 
the negatives as opposed to viewing a broad array of options. 
Eligibility is deficit-based; therefore, the family is forced 
to describe the person as being as needy as possible to get the 
minimum amount of care.
    We must have an enhanced Federal match and short-term 
Federal program to buy back nursing home beds in States where 
there is excess nursing home capacity. This would be a one-
time-only option; then, nursing homes would enter into a 
competitive market. This would require nursing homes to retool 
and would create incentives for them to provide other kinds of 
services and supports.
    We currently have a long-term care system that was built on 
a model for acute care--namely, the hospital--rather than for 
chronic care. We must rationalize our system of long-term care 
so that health care is incorporated into the context of 
everyday life. Normal, everyday life in the community should 
not have to stop just because a person needs chronic care and 
long-term support.
    There are a few long-term issues that would need to be 
addressed in dealing with long-term care reform. Incentives are 
needed to create equity in States between the public and 
private sector for direct-support professionals. This could be 
achieved by funding the recommendations as outlined in the 
reauthorization of the Developmental Disabilities Act.
    Another issue that needs to be addressed is that there is 
currently a work force crisis. Studies show that care from 
family members is a huge unreimbursed service. This is a double 
dilemma for the developmental disabilities population being 
cared for by aging family members.
    The services that they provide keep individuals out of more 
costly and restrictive environments. However, as the caregivers 
are aging, it takes a toll on them, impacting women more than 
men. One way to deal with this is to support family members so 
that they may provide care for the family member who is aging 
or has a disability. This will not replace the current work 
force but will help build a more comprehensive work force that 
is capable of meeting growing consumer demands.
    Overall, we need a comprehensive long-term care system that 
addresses issues such as flexibility, supporting rather than 
replacing family caregiving, reimbursement rates, workforce 
capacity, housing, consumer direction, financial incentives for 
providers to re-tool in order to meet consumer demand, 
development of a broad array of options, informed choices, 
transportation and recreation.
    This new system should be guided by a focus on serving all 
persons with disabilities, regardless of whether the disability 
was acquired by birth, accident or injury, or by the aging 
process.
    But most importantly, I would like to leave you with one 
final concept. There is a term that is used in the disability 
community and that is: ``Nothing about me without me.'' What 
that means is that services and systems should not be developed 
unless the consumers are meaningfully involved in the 
development of the services that affect their lives.
    Thank you.
    [The prepared statement of Ms. Brackin follows:]
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    The Chairman. Thank you, Ms. Brackin, and I thank all the 
members of the panel for their very important testimony.
    Let me start with a question of a general nature on the 
Olmstead decision. It was brought under the Americans with 
Disabilities Act. The question that I think Ms. Allen and Ms. 
Rosenbaum particularly talked about was the coverage of the 
decision and that there is some uncertainty about what is 
covered and what is not, and there is a question in my opinion 
as to whether Congress needs to clarify that uncertainty.
    Is the coverage of the requirement of the Supreme Court 
decision intended, do you think, to cover disabilities outside 
of the disabilities that that the Americans with Disabilities 
Act covers? I am thinking that you have mental disabilities, 
you have physical disabilities, and I guess you have 
disabilities that are just brought on by old age, which is not 
specifically diagnosed as being a hip problem or an Alzheimer's 
problem or some other type of mental disability.
    Does the Olmstead decision cover people who are just old, 
for instance, who do not have a, ``disability'' in the more 
traditional sense, or is in fact just becoming very old a 
disability in and of itself under the terms of this decision? 
Can I get some discussion on that?
    Ms. Rosenbaum. Yes, Mr. Chairman. The way the ADA is 
structured is actually quite notable given your question. It is 
structured not to turn on specific conditions or specific 
groups of people. It defines ``disability'' in terms of your 
relative ability to function in relation to how people in your 
age and class would function. So, for example, as people age--
the ADA definition of ``disability'' is that you have a 
physical or mental impairment which essentially affects your 
normal daily functioning, has a major impact on normal 
functions. Well, of course, as you age, what becomes normal 
daily functioning changes somewhat, so the presence of a 
disability in a person who is old is not measured against what 
that person should do when the person is 37. In that sense, it 
does not have an infinite capacity to classify everybody who is 
old as a person with a disability, and in fact, a couple of 
years ago, the Supreme Court made clear that there are real 
limits on who is disabled under the ADA.
    The Chairman. So is it fair to say that the Olmstead 
decision, in your opinion, would cover any individual who needs 
care from the State program?
    Ms. Rosenbaum. It really covers any individual who, because 
of any kind of physical or mental impairment--and there is a 
long listing, but that is by class of impairments; there are a 
few exclusions under the Act--but who is unable to perform the 
normal tasks of living. It gets us away from the kind of work 
test that is in the Social Security Act or a ``specific 
crippling conditions'' test. So it is a very factual 
evaluation, and one of the big issues in the ``Olmstead 
cases,'' as they are known, as access to the kinds of 
evaluations that assure that you are part of the group, 
figuring out what you need and how much resources and services 
you will then be eligible to receive.
    So in terms of further congressional clarification, I 
actually think that the law is broadly enough conceived to 
allow a fair amount of policy implementation go forward under 
it.
    The Chairman. Ms. Allen?
    Ms. Allen. Yes, if I could add to that, the ADA--
specifically, Title II--which was at question in this Supreme 
Court Decision, applied to people who are considered 
``qualified individuals.'' Within the context of public 
programs, what that means is that the individual needs to 
qualify for or meet the eligibility standards for that public 
program--for example, if a person is Medicaid eligible by 
reason of either disability as defined within the program or 
because of income standards, that person would be covered as a 
qualified individual under the ADA. If a person is at a much 
higher income standard and does not meet the qualifications to 
be eligible for the Medicaid program, that person would not 
specifically be covered by this provision of the ADA. I believe 
that is the case.
    The Chairman. Ms. Allen, in your opinion, do you think this 
is something that Congress needs to elaborate on or clarify, or 
do you think the decision stands on itself and there is enough 
information to the various State providers to be able to 
operate with some degree of assurance that they are doing the 
right thing?
    Ms. Allen. At this point, there are just scores of lawsuits 
that have been brought and are being settled. At this point, we 
have not analyzed and summarized the outcome of those. Ms. 
Rosenbaum perhaps has done more of that than we have. I am 
uncertain as to whether Congress needs to act yet, or does it 
need to instead better understand the resolution at lower 
courts and then how that is playing out.
    The Chairman. And of course, we have to understand that 
this is not just for the elderly; children who are disabled 
would be eligible for the program and would come under the 
Olmstead requirements as well.
    Ms. Allen. Absolutely.
    Ms. Rosenbaum. If I could just add, Mr. Chairman, in terms 
of what an individual who is covered by the Act could get a 
court to order, while the coverage under the Act is very broad, 
in fact, the remedies that the ADA allows are relatively 
narrow.
    For example, there has now been a series of decisions, 
including one by the Supreme Court, saying that a court could 
not order a State Medicaid program to change its plan, to add 
services that are not in its plan. You could require a State to 
spend up to the limits of its State plan; if it says it has 
3,000 waiver slots, as they are known, and is only funding 
1,000 waiver slots, the State would have to spend up to 3,000. 
But you could not make a State--at least, not under current 
law--you could not make a State add State plan services that 
are not already covered under the plan.
    You probably could not make a State add a housing program 
where there was none, but if a State had a housing program that 
had no capacity in it whatsoever for people with disabilities, 
that would be a different issue.
    So it has to do with how you are administering your 
program.
    The Chairman. It is a chicken-and-egg situation. There will 
not be a lot of other assisted living-type facilities if they 
know they are not going to be reimbursed through a State 
Medicaid program----
    Ms. Rosenbaum. That is right.
    The Chairman [continuing.] but if they know that they are 
going to be reimbursed, you are going to see the creation of an 
entire industry trying to provide services that are outside the 
traditional institutionalized care.
    Ms. Brackin, I take it our State of Louisiana was one of 
the first to reach an agreement or a settlement of the suit 
based on the Olmstead decision.
    Ms. Brackin. Yes, sir. Our State was one of the first, and 
it provides more choice for individuals and ensures that 
individuals will be informed about the services. One of the 
problems right now is that people are not exposed to what their 
options are and feel that nursing home care is the only option 
that is available to them. So that is one of the things that 
will actually change by the Barthelemy lawsuit.
    The Chairman. Do you mean the information being provided 
that there are alternatives?
    Ms. Brackin. Yes.
    The Chairman. Professor Rosenbaum spoke to the fact that 
because we have always had an institutional bias in all 
States--that that is what you do with disabled people--there 
are not in fact a lot of alternatives out there--and I am sure 
that our State is no different from the majority of them, where 
there are not a lot of alternatives.
    How do you think that is going to change, and is it going 
to change?
    Ms. Brackin. One thing that is also included in the 
Barthelemy lawsuit is that more options need to be available 
for individuals, so what will happen because of this lawsuit is 
that options will be created, and people will be informed about 
what those options are.
    The Chairman. When you say ``options will be created,'' are 
you envisioning State-constructed options, or are you talking 
about the ability to have people stay in a family type of 
setting, or both?
    Ms. Brackin. Options will be created by both Federal and 
State policies and procedures. Right now, the infrastructure 
does not exist completely for anybody who is currently in a 
nursing home to move into the community and receive the 
supports and services that they need. One of the issues that I 
spoke about is the work force crisis. If you have an 
institutional setting, and one individual is supervising 20, 
and 20 move out into the community, you need to build the work 
force in order to meet that greater demand for personal care 
services. So what will happen is that as more and more people 
move into the community, we will start building that 
infrastructure to meet their needs; more programs will be 
developed.
    Another issue that is going to be a problem that we are 
going to need to work on is transportation and recreation. 
There are so many issues that will need to be addressed. Some 
of them will be long-term, and some of them will be short-term, 
but we will develop a lot of those programs as people move into 
the community.
    The Chairman. I note under ``Substance of Reform, Short-
Term Suggestions''--are those things that we are doing with the 
settlement agreement in Louisiana, or are these just 
recommendations for future consideration?
    Ms. Brackin. Those are recommendations for future 
consideration.
    The Chairman. Because you include some things that I know 
are going to be somewhat controversial, and that is not 
surprising because we are dealing with something that has been 
operating in only one fashion for a long period of time, but 
you are talking about changing regulations so that family 
members can be reimbursed for care.
    Ms. Brackin. Yes. That is one way to address the work force 
crisis. Right now, family members are providing a lot of the 
care which is alleviating the burden on State and Federal 
Governments. We need to compensate family members to some 
degree for the care they provide so they can continue to 
provide that care.
    The alternative, if that is not happening, is that some 
individuals will be forced to go into 24-hour nursing home care 
when 24-hour care is not what they need and would wind up being 
more costly.
    The Chairman. You also mentioned that you have had some 
discussion on what is a required benefit and an entitlement, if 
you will. Removing nursing home care is a required benefit and 
entitlement under Medicaid, and making home and community-based 
long-term services a required benefit under Medicaid to be on 
the same level as nursing homes.
    Can you give me some discussion on what your thinking is on 
that?
    Ms. Brackin. Well, I could probably put together a more 
formal report at a later date and research some of the policies 
and procedures so that I do not misquote anything; but the 
point is that right now, they are not on the same footing, so 
it is creating an institutional bias when money is available 
for nursing home care, and it is not available for home and 
community-based services, so people are forced to go into that 
environment in order to receive services at all because that is 
where the money is.
    The Chairman. I take it that under our State and probably 
under most of the States, if you are a Medicaid-eligible 
person, you are entitled to an institutional setting, i.e., 
nursing home, but you are not necessarily entitled to a home 
health care assistance program?
    Ms. Brackin. Right.
    The Chairman. Thank you.
    Senator Craig.
    Senator Craig. I will ask this question first because of 
the time involved; I think, Mr. Chairman, we have a vote 
planned for around 2 o'clock.
    Dr. Lowe, I understand that in the early 1990's, with a 
grant from your organization, four States--California, 
Connecticut, Indiana, and New York--initiated programs to 
create public-private partnerships to provide for long-term 
care coverage without having to spend down the Medicaid 
eligibility.
    Do you have any information on the status of those 
partnerships?
    Dr. Lowe. I do not, sir, but I will be happy to get that 
information for you.
    Senator Craig. If you would, I would appreciate it. I think 
that that is a potential model that we would want to look at to 
see how that is working.
    [Information of Dr. Lowe follows:]
    The Robert Wood Johnson Foundation's Partnership for Long 
Term Care was designed to explore alternatives for long term 
care financing by encouraging the blending of public and 
private insurance. Four States, California, Connecticut, 
Indiana and New York, received grants to implement programs 
that combine long term care insurance with Medicaid. All four 
of the program use private insurance to cover the initial costs 
of long term care. Consumers who purchase Partnership approved 
policies become eligible for Medicaid services after their 
private insurance is exhausted without spending down all their 
assets as is required to meet Medicaid eligibility criteria. 
All Partnership approved policies must meet quality guidelines 
established by the individual States.
    To date, the four Partnership states report that a total of 
70,027 policies have been issued with 57,963 policies in force. 
These data are from the States' internal reporting systems. A 
comprehensive analysis of this program can be found in the 
book, Who will Pay for Long Term Care? Insights from the 
Partnership Programs, Editor, Nelda McCall, Chicago: Health 
Administration Press, 2001.

    Senator Craig. Ms. Allen, your testimony highlights that 
changing demographics will drive an increased demand for long-
term care services. Are you expecting these demographics to 
result in demand for different services than are currently 
available? Does your analysis look at it in that way?
    Ms. Allen. We were not specific in terms of the types of 
services, but we can expect they would be fairly comparable to 
what we have today. The services are actually quite far-
ranging. Some of them are very hands-on, very physical, for 
people who have severe physical disabilities who might need 
help just moving about. But for many people, particularly aging 
seniors who have perhaps more cognitive disabilities, it might 
require more assistance just in managing their lives in terms 
of prompting them to do certain things for self-management.
    The real issue, though, is simply the volume of additional 
services that will be needed. There are now about 35 million 
individuals who are age 65 or older, and by the year 2040, we 
are projecting that number to more than double, to more than 77 
million people. That sheer volume of people alone will dictate 
that more care be available.
    Senator Craig. It is a matter of cost per individual on an 
average out in that community of services searching for the 
service that fits them. By that very character, I assume you 
are extrapolating that the costs will go up dramatically.
    Ms. Allen. Exactly, just because of the sheer numbers of 
affected individuals.
    Senator Craig. Ms. Rosenbaum, beyond the work that you have 
done and the studies that are being done at the university, are 
you prepared to make specific policy recommendations to 
Congress or to us as we look toward reforming the country's 
long-term care system based on the analysis that you have done 
through these complaints?
    Ms. Rosenbaum. We are, Senator Craig, and I do concur with 
many of the recommendations made by Ms. Brackin. Within the 
Medicaid program itself, which of course, as Ms. Allen pointed 
out, is the biggest source of at least the health and health-
related financing that is needed for all of this, there are a 
number of recommendations that would significantly improve the 
availability of Medicaid funding to States for these 
activities, and I think that probably Congress is going to have 
to confront head-on. In particular, there are a couple of 
different medical assistance limits that have always been in 
the program. One is the sacred cow that it does not pay for 
room and board except in a skilled nursing facility. We need 
somehow to pay for physical adaptive housing at this point that 
goes beyond a simple apartment and can deal with all of these 
people with physical disabilities.
    The other issue is exactly the issue that Ms. Brackin 
identified, which is that Medicaid does not do well by people 
who are trying to live at home with their own families. Whether 
it is because the family members are not paid, whether it is 
because the eligibility criteria do not work very well for 
people who are in their own homes, you cannot even trigger your 
coverage--that is a second problem.
    The third problem is how poorly Medicaid works under the 
current structure for people with mental illness, because in 
order to qualify for these home care services, you have to 
essentially demonstrate your need for institutional care 
services, and of course, Medicaid coverage for institutional 
care services for people with mental illness is really not very 
available.
    So I think that Congress is looking at some fundamental 
revisiting.
    The final point I would make is that Medicaid runs off the 
Social Security definition of ``disability,'' which is a work 
definition. That is so outdated today. If we are serious about 
being able to retool the program to support people living in 
their communities and working, we need to do more of what you 
did as part of the Ticket to Work Act, which is to rethink 
Medicaid's availability to people who are working and playing 
and living at home, but who need some extra services and 
supports. And today, Medicaid cannot really do that.
    Senator Craig. Do you know of any analyses--I know that we 
have some limited working programs that actually go into the 
home--you talked about the physical characteristics of the home 
and adapting that or changing that to fit the needs of the 
individual. I was recently visited by a group that blends 
Federal and private money toward going in and making a home 
more accessible and usable by the senior who might otherwise 
need to be institutionalized or at least in a setting that 
would accommodate that. Out of that which you have looked at, 
does that seem to come forward as a fairly important part of 
the requirements or the requests of need?
    Ms. Rosenbaum. It is essential. If you look at the programs 
that the Johnson Foundation has funded over the years which 
build, of course, really, all on the original On Lok 
demonstration, which is the hallmark of Congress' thinking--if 
you go back 25 or 30 years, you could find the model back 
then--we have never really succeeded in building the elements 
of On Lok into ongoing policy options or requirements. We keep 
funding demonstrations or waivers or add-ons or alternative for 
subclasses of people.
    I think that Ms. Brackin is exactly right that the very 
nature of the entitlement to assistance in Medicaid needs to be 
rethought. The days of having it simply be a recovery-based 
nursing home are behind us.
    The other group that I would suggest to this committee is 
the Center for Independent Living, which has done pioneering 
work over the years in thinking about what people with 
disabilities need to be able to adapt to a community.
    Senator Craig. Thank you.
    Mr. Chairman, I thank you.
    The Chairman. I just have a few other questions.
    Ms. Allen, you mentioned in your statement that some have 
interpreted the Olmstead decision as perhaps going farther than 
it actually did. Can you elaborate on that? What are they 
thinking--and that may not be correct.
    Ms. Allen. I did not intend to suggest that it is 
incorrect. I was simply trying to portray that many, including 
the Health Care Financing Administration early on and now, of 
course, the Centers for Medicare and Medicaid Services, early 
interpreted that the reach of the decision was beyond the 
specific circumstances of the Olmstead case because it was an 
interpretation of the Americans with Disabilities Act, which 
has a broader definition.
    This is what is helping, I think, to raise the concern for 
many, recognizing that we have this larger population, not only 
of those directly affected by mental illness or mental 
disability, but also aging seniors, and that is perhaps driving 
the concern about how to respond to this.
    The Chairman. Thank you.
    Dr. Lowe, you had talked about additional information for 
consumers. It seems like we always have an overabundance of 
information. I notice there is a whole list of different 
programs and things that are available. Is there, for instance, 
one website that would be helpful to people who are looking for 
the various services that may be available for someone who 
finds himself or herself in an Olmstead type of decision--
because I take it that most of these decisions are not going to 
be made by the person who would benefit from the service 
directly as much as they will be by the children and 
grandchildren who are perhaps involved in taking care of that 
person.
    If I had a person in my family, for example, and I wanted 
to know what was available, where would I go? Is there any 
single good place to start, rather than having a committee 
hearing like this?
    Dr. Lowe. There are actually literally hundreds of websites 
out there that help people navigate the system by identifying 
sources of care. Some of the States and communities themselves 
have developed navigational internet systems. Charlotte, NC has 
one called ``Just One Call'' which connects people to actual 
services rather than just the giving them information.
    But in terms of just one, I do not think there is just one. 
I think the situations that people find themselves in are 
complicated by their own individual circumstances, so there is 
no single site where every person who is looking for 
information go.
    The Chairman. Is it something that we can encourage, maybe 
through the Centers for Medicare and Medicaid Services, that 
each State would develop some kind of a one-stop shopping 
center for information on this?
    Dr. Lowe. I think there are examples of State one-stop 
shopping that would be worth looking at. New Jersey has 
developed the New Jersey EASE Program. I think the success of 
trying to match people with services on the State level, when 
what they are really looking for are local services, makes 
these things very complex. So there is probably a need for 
State and local partnerships.
    There are plans at the Federal level to develop a 211 
information and referral telephone number. I am not sure where 
that stands but I think that that is something we ought to 
become more informed about.
    The Chairman. Ms. Brackin, what about in Louisiana, if I 
were looking to find out what would be available for my father, 
for instance, is there a place I could go to find out? I think 
most people, when they think about an elderly person who is 
disabled because of problems associated with aging, instantly 
think of a nursing home; and for many, that is clearly the 
right solution, but for a large segment of them, it is probably 
not the correct and best available solution to the problem.
    How can we help convey that additional information?
    Ms. Brackin. There are two provisions of the Barthelemy 
lawsuit that were designed specifically to address that issue. 
One is that a toll-free number will be established that 
individuals can call to find out about the long-term care 
options that are available to them. The second is that there is 
a provision that the Department of Health and Hospitals will 
develop a training component for professionals that would be 
most likely to interact with individuals who would need long-
term care services so that they are aware of the options that 
are available to individuals.
    In addition, because of the Real Choice Systems Change 
Grants that came out from CMS recently, the Disability Services 
and Support Systems Planning Group is looking at a single point 
of entry instead of one-stop--now, with the Work Force 
Investment one-stop issues, we are trying to get away from the 
``one-stop'' term--but a single point of entry for all 
populations is what they are looking at. They are in the 
process of developing an individual report that will go to 
David Hood, the Secretary of the Department of Health and 
Hospitals, and that single point of entry concept will be 
included in that report--not that the State needs to move on it 
very quickly but only that they want to mention that this is 
something that is very important that the Disability Services 
and Support Systems Planning Group wants to focus on and move 
toward in the State of Louisiana.
    The Chairman. Under the concept of the 1-800 number if it 
is to be fully implemented, when you call that number, what is 
the concept, and to whom are you likely to speak?
    Ms. Brackin. I cannot answer that because the settlement 
was just finalized not too long ago, but I can find that out.
    The Chairman. I was just wondering if you were writing the 
recommendation as far as who would be at the other end of that 
1-800 phone call, who would it be--what would your 
recommendation be?
    Ms. Brackin. I have not been involved in it, but I will 
find out what that is going to look like.
    The Chairman. I will tell you what I think, and I am not a 
party to the lawsuit, but I would want to be able to call a 1-
800 number and say, ``Look, my father is 90 years old, and he 
is having problems. What are my options?'' and I would want 
that person to be able to tell me, ``Here are your options, and 
here is what the State helps with financially, and here is what 
the Federal Government helps with financially.'' At a minimum, 
I think that that is what the person should be able to convey 
to the caller.
    Does anybody else have any ideas about that?
    Ms. Allen. Yes, Mr. Chairman. As part of the Family 
Caregiver Support Act that was passed last year, a very 
essential component of that is to help connect family 
caregivers with community-based services where they live. The 
Act was funded at about $125 million for this year, which some 
would say there is some question about how far that will go, 
but certainly, one of the principles there was to establish a 
point of contact that one could call in one's own community.
    Often, these are connected with the area agencies on aging, 
which are very pervasive, so to the extent that people know to 
look in their local telephone books and contact that agency, 
that is a good place to start.
    The Chairman. We have so many programs, and sometimes you 
can get lost in the numbers; you do not know where to go. So it 
is sometimes very, very confusing.
    Well, I think this has been very helpful. I would hope that 
all of the States could pay attention to the things that have 
been discussed at the hearing today and the information that is 
out there, because to a certain degree, I think there is a 
difference or a lack of understanding as to what Olmstead 
really stands for, what it requires the States to do, and 
States are in various modes of trying to reach agreements and 
settlements as a result of this decision. I am very pleased 
that Louisiana is one of the first to have actually reached a 
settlement which outlines a procedure for responding to the 
Olmstead decision. I think that everyone can be congratulated 
for that.
    I think all of this points to a rather obvious problem. The 
Medicaid program was never intended to be a long-term care 
program for seniors in this country. It was a program that was 
intended to provide medical assistance for poor people. And 
now, I am sure that up to 20 percent of people--and more in my 
State--probably 90 percent-plus of the people in nursing homes 
in Louisiana, right----
    Ms. Brackin. That is right.
    The Chairman [continuing.] are covered by Medicaid--at 
least 90 percent if not more than that, and some of them, it is 
100 percent of the people in nursing home settings being paid 
for through Medicaid, which requires you to become poor before 
you become eligible, when the truth in fact is that we ought to 
be looking at long-term care for everybody in this country. And 
we are in the process of trying to come up with some concepts 
and ideas for the next session to look at some recommendations 
on long-term care--how do we provide it; how do we help people 
have insurance for it, for instance; how do we get younger 
people to be more concerned about what their long-term care is 
going to look like when they become eligible for it and in fact 
become in need of that kind of care--because when you are 25 
years old, you are not thinking about what it is going to be 
like when you are 75 or 85 or older than that in today's 
society.
    So we are going to be looking at some recommendations to 
the relative committees in Congress to address the question of 
long-term care. But in the meantime, we are sort of stuck with 
trying to make a round peg fit into a square hole by using the 
Medicaid program to pay for long-term care coverage, although 
it was never intended to do that. So we come up against all of 
these difficulties, and that is one of the difficulties we have 
discussed today.
    I thank all of you very much for being with us. I think you 
have enlightened a lot of people out there about what they can 
and cannot do and what they need to be doing, and we thank you 
for that.
    With that, the Aging Committee will be adjourned.
    [Whereupon, at 2:15 p.m., the committee was adjourned.]

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