[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 U.S. GOVERNMENT PRINTING OFFICE 76-174 PDF WASHINGTON : 2001 For Sale by the Superintendent of Documents, U.S. Government Printing Office Internet: bookstore.gpo.gov Phone: toll free (866) 512-1800; (202) 512-1800 Fax: (202) 512-2250 Mail: Stop SSOP, Washington, DC 20402-0001 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. 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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:] [GRAPHIC] [TIFF OMITTED] T6174.030 [GRAPHIC] [TIFF OMITTED] T6174.031 [GRAPHIC] [TIFF OMITTED] T6174.032 [GRAPHIC] [TIFF OMITTED] T6174.033 [GRAPHIC] [TIFF OMITTED] T6174.034 [GRAPHIC] [TIFF OMITTED] T6174.035 [GRAPHIC] [TIFF OMITTED] T6174.036 [GRAPHIC] [TIFF OMITTED] T6174.037 [GRAPHIC] [TIFF OMITTED] T6174.038 [GRAPHIC] [TIFF OMITTED] T6174.039 [GRAPHIC] [TIFF OMITTED] T6174.040 [GRAPHIC] [TIFF OMITTED] T6174.041 [GRAPHIC] [TIFF OMITTED] T6174.042 [GRAPHIC] [TIFF OMITTED] T6174.043 [GRAPHIC] [TIFF OMITTED] T6174.044 [GRAPHIC] [TIFF OMITTED] T6174.045 [GRAPHIC] [TIFF OMITTED] T6174.046 [GRAPHIC] [TIFF OMITTED] T6174.047 [GRAPHIC] [TIFF OMITTED] T6174.048 [GRAPHIC] [TIFF OMITTED] T6174.049 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:] [GRAPHIC] [TIFF OMITTED] T6174.050 [GRAPHIC] [TIFF OMITTED] T6174.051 [GRAPHIC] [TIFF OMITTED] T6174.052 [GRAPHIC] [TIFF OMITTED] T6174.053 [GRAPHIC] [TIFF OMITTED] T6174.054 [GRAPHIC] [TIFF OMITTED] T6174.055 [GRAPHIC] [TIFF OMITTED] T6174.056 [GRAPHIC] [TIFF OMITTED] T6174.057 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:] [GRAPHIC] [TIFF OMITTED] T6174.058 [GRAPHIC] [TIFF OMITTED] T6174.059 [GRAPHIC] [TIFF OMITTED] T6174.060 [GRAPHIC] [TIFF OMITTED] T6174.061 [GRAPHIC] [TIFF OMITTED] T6174.062 [GRAPHIC] [TIFF OMITTED] T6174.063 [GRAPHIC] [TIFF OMITTED] T6174.064 [GRAPHIC] [TIFF OMITTED] T6174.065 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.] -