The plaintiffs in the Olmstead case were two women with developmental disabilities and mental illness who claimed that Georgia was violating title II of the ADA, which prohibits discrimination against people with disabilities in the provision of public services. Both women were being treated as inpatients in a state psychiatric hospital. The women and their treating physicians agreed that a community-based setting would be appropriate for their needs. The Supreme Court held that it was discriminatory for the plaintiffs to remain institutionalized when a qualified state professional had approved community placement, the women were not opposed to such a placement, and the state could reasonably accommodate the placement, taking into account its resources and the needs of other state residents with mental disabilities. The Olmstead decision is an interpretation of public entities’ obligations under title II of the ADA. As one of several federal civil rights statutes, the ADA provides broad nondiscrimination protection for individuals with disabilities in employment, public services, public accommodations, transportation, and telecommunications. Specifically, title II of the ADA applies to public services furnished by governmental agencies and provides in part that “no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.” Two ADA implementing regulations were key in the Supreme Court’s ruling in Olmstead. The first requires that public entities make “reasonable modifications” when necessary to avoid discrimination on the basis of disability, unless the entity can demonstrate that the modification would “fundamentally alter the nature of the service, program or activity.” The second requires public entities to provide services in “the most integrated setting appropriate to the needs of qualified individuals with disabilities.”That setting could be in the community, such as a person’s home, or in an institution, depending on the needs of the individual. For example, professionals might agree that a nursing home is the most integrated setting appropriate for an institutionalized person’s needs. In Olmstead, physicians at the state hospital had determined that services in a community-based setting were appropriate for the plaintiffs. The Supreme Court recognized, however, that the appropriate setting for services is determined on a case-by-case basis and that the state must continue to provide a range of services for people with different types of disabilities. The ADA has a broad scope in that it applies to individuals of all disabilities and ages. The definition of disability under the ADA is a physical or mental impairment that is serious enough to limit a major life activity, such as caring for oneself, walking, seeing, hearing, speaking, breathing, working, performing manual tasks, or learning. The breadth of this definition thus covers people with very diverse disabilities and needs for assistance. For some individuals with disabilities, assistance from another person is necessary—direct, “hands-on” assistance or supervision to ensure that everyday activities are performed in a safe, consistent, and appropriate manner. For others, special equipment or training may enable them to continue to function independently. Disability may be present from an early age, as is the case for individuals with mental retardation or developmental disabilities; occur as the result of a disease or traumatic injury; or manifest itself as a part of a natural aging process. Moreover, the assistance needed depends on the type of disability. For example, individuals with physical disabilities often require significant help with daily activities of self-care. In contrast, individuals with Alzheimer’s disease or chronic mental illness may be able to perform everyday tasks and may need supervision rather than hands-on assistance. To be a “qualified” individual with a disability under title II of the ADA, the person must meet the eligibility requirements for receipt of services from a public entity or for participation in a public program, activity, or service—such as the income and asset limitations established for eligibility in the Medicaid program. The breadth of the disabled population to whom Olmstead may eventually apply is uncertain. Much is unknown about the widely varying population of people with disabilities, the settings in which they are receiving services, and the extent to which their conditions would put them at risk of institutionalization. Demographic data show, however, that the response to Olmstead will take place in the context of significant increases in the number of people with disabilities. As the baby boom generation grows older, they are more likely to be affected by disabling conditions. Of the many public programs that support people with disabilities, the federal-state Medicaid program plays the most dominant role for supporting long-term care needs. Services through this program have been provided primarily in institutional long-term care settings, but a growing proportion of Medicaid long-term care expenses in the past decade has been for home and community-based services. At present, however, there are wide differences between states in the degree to which home and community-based services are provided. States also face varying challenges in supporting community living beyond what can be provided through long-term care programs, such as ensuring adequate supports for housing and transportation, and maintaining adequate programs to ensure quality care is provided in community settings. The Olmstead decision has been widely interpreted to apply to people with varying types of disabilities who are either in institutions or at risk of institutionalization. One reason for the uncertainty about how many may be affected is that, as the decision recognized, the appropriateness of a person’s being placed in an institution or receiving home or community- based services would depend in part on the person’s wishes and the recommendations of his or her treatment professionals. Another reason is that information on the number of people with disabilities who are at risk of institutionalization is difficult to establish. Number of institutionalized individuals. On the basis of information from different sources, we estimate that the total number of people with disabilities who are being served in different types of institutional settings is at least 1.8 million. This figure includes about 1.6 million people in nursing facilities, 106,000 in institutions for the mentally retarded or developmentally disabled, and 57,000 in state and county facilities for the mentally ill. Number at risk of institutionalization. The number of people who are living in the community but at risk of institutionalization is difficult to establish. In an earlier study we estimated that, nationwide, 2.3 million adults of all ages lived in home or community-based settings and required considerable help from another person to perform two or more self-care activities. More difficult to estimate is the number of disabled children at risk of institutionalization. The demographics associated with the increasing number of aging baby boomers will likely drive the increased demand for services in a wide range of long-term care settings. Although a chronic physical or mental disability may occur at any age, the older an individual becomes, the more likely a person will develop disabling conditions. For example, less than 4 percent of children under 15 years old have a severe disability, compared with 58 percent of those 80 years and older. The baby boom generation— those born between 1946 and 1964—will contribute significantly to the growth in the number of elderly individuals with disabilities who need long-term care and to the amount of resources required to pay for it. The oldest baby boomers, now in their fifties, will turn 65 in 2011. In 2000, about 13 percent of our nation’s population was composed of individuals aged 65 or older. By 2020, that percentage will increase by nearly one-third to about 17 percent—one in six Americans—and will represent nearly 20 million more seniors than there are today. By 2040, the number of seniors aged 85 and older will more than triple to 14 million (see fig. 1). However, because older people are healthier now than in the past, no consensus exists on the extent to which the growing elderly population will increase the number of disabled elderly people needing long-term care. Projections of the number of disabled elderly individuals who will need care range between 2 and 4 times the current number. The changing demographics will also likely affect the demand for paid long-term care services. An estimated 60 percent of the disabled elderly living in communities now rely exclusively on their families and other unpaid sources for their care. Because of factors such as the greater geographic dispersion of families and the large and growing percentage of women who work outside the home, many baby boomers may have no option but to rely on paid long-term care providers. A smaller proportion of this generation in the future may have a spouse or adult children to provide unpaid care and therefore may have to rely on more formal or public services. Medicaid is by far the largest public program supporting long-term care.States administer this joint federal-state health financing program for low- income people within broad federal requirements and with oversight from the Centers for Medicare and Medicaid Services (CMS), the agency that administers the program at the federal level. In 2000, Medicaid long-term care expenditures represented over one-third of the total $194 billion spent by Medicaid for all medical services. Although at least 70 different federal programs provide assistance to individuals with disabilities at substantial cost, Medicaid is the most significant source of federal funds for providing long-term care. Earlier this year, we reported that Medicaid paid nearly 44 percent of the $134 billion spent nationwide for long-term care in 1999, including postacute and chronic care in nursing homes and home and community-based care. Individuals needing care, and their families, paid for almost 25 percent of these expenditures out-of-pocket. Medicare and other public programs covered almost 17 percent, and private insurance and other private sources (including long-term care insurance as well as services paid by traditional health insurance) accounted for the remaining 15 percent. (See fig. 2.) These amounts, however, do not include the many hidden costs of long-term care. For example, they do not include wages lost when an unpaid family caregiver takes time off from work to provide assistance. Historically, Medicaid long-term care expenditures have financed services delivered in nursing homes or other institutions, but the proportion of spending directed to home and community-based care has increased steadily over the past decade, as shown in figure 3. Federal and state Medicaid spending on home and community-based services was about $18 billion (27 percent) of the $68 billion spent on long-term care in fiscal year 2000. Much of the Medicaid coverage of home and community-based services is at each state’s discretion. One type of coverage, however, is not optional: states are required to cover home health services for medically necessary care (see table 1). A second type of services, called personal care, is optional. The primary means by which states provide home and community-based services is through another optional approach: home and community-based services (HCBS) waivers, which are set forth at section 1915(c) of the Social Security Act. States apply to the federal government for these waivers, which, if approved, allow states to limit the availability of services geographically, target specific populations or conditions, control the number of individuals served, and cap overall expenditures. To receive such a waiver, states must demonstrate that the cost of the services to be provided under a waiver (plus other state Medicaid services) is no more than what would have been spent on institutional care (plus any other Medicaid services provided to institutionalized individuals). States often operate several different waivers serving different population groups, and they have often limited the size and scope of the waivers to help target their Medicaid resources and control spending. While expenditures for these services have generally grown over time, states’ use of HCBS waivers to provide services in community settings has grown at the highest rate. Expenditures for services provided under HCBS waivers grew at an average annual rate of 28 percent between 1988 and 2000—twice as much as Medicaid’s expenditures for home health services and three times as much as for personal care services. Expenditures under the HCBS waivers vary widely with the type of disability covered. The average cost across all programs in 1999 was about $15,331 per recipient. For persons with developmental disabilities, the average cost was twice the average ($30,421); for programs serving the aged and aged disabled, the average cost was much lower ($5,849). This variation results from several factors, but primarily from differences in the type and amount of program services supplied versus services from other sources such as family members. The average costs for providing waiver and other home and community-based services is much lower than average costs for institutionalizing a person. However, the costs of these community-based services do not include significant other costs that must be covered when a person lives in his or her home or in a community- based setting, such as costs for housing, meals, and transportation, as well as the additional costs and burden for family and other informal caregivers. The proportion of Medicaid long-term care spending devoted to home and community-based services varies widely among states. Some states have taken advantage of Medicaid HCBS waivers to develop extensive home and community-based services, while other states have traditionally relied more heavily on institutional and nursing facility services. This variation is reflected in differences in the extent of states’ total Medicaid long-term care spending devoted to home and community-based care (defined to include the waivers, home health, and personal care services). For example, in 1999, 9 states devoted 40 percent or more of Medicaid long- term care expenditures to community-based care, whereas 11 states and the District of Columbia devoted less than 20 percent. (See fig. 4.) States also vary in the amount of home and community-based services they offer specifically through HCBS waivers. According to data compiled by researchers, an estimated 688,000 disabled persons were being served under 212 HCBS waivers in 49 states (excluding Arizona) and the District of Columbia in 1999. (See app. I.) These waivers covered several different types of disabled populations and settings. All but two states operated at least one waiver covering services for people with mental retardation or developmental disabilities, and all but the District of Columbia operated at least one waiver for the aged disabled. Overall, states had 73 waivers covering services for people with mental retardation or developmental disabilities serving nearly 260,000 participants, 65 waivers covering services for almost 382,000 aged or aged disabled participants, and 27 waivers serving about 25,000 physically disabled individuals. Nationwide, the number of people served by waivers varies substantially across states. Oregon, for example, served more than 8 times as many people per capita in its large waiver for the aged and disabled, compared with several other states that had waivers for the same target population. In most states, the demand for HCBS waiver services has exceeded what is available and has resulted in waiting lists. Waiting list data, however, are incomplete and inconsistent. States are not required to keep waiting lists, and not all do so. Among states that keep waiting lists, criteria for inclusion on the lists vary. In one 1998-99 telephone survey of 50 states and the District of Columbia, Medicaid officials in 42 states reported waiting lists for one or more of their waivers, although they often lacked exact numbers. Officials in only eight states reported that they considered their waiver capacity and funding to be adequate and that they did not have waiting lists for persons eligible for services under those waivers. The states face a number of challenges in providing services to support people with disabilities living in the community, and these challenges extend beyond what can be provided by the Medicaid program alone. The additional costs to the states of supporting people with disabilities in the community are a concern. For example, Medicaid does not pay for housing or meals for individuals who are receiving long-term care services in their own homes or in a community setting, such as an adult foster home. Consequently, a number of state agencies may need to coordinate the delivery and funding of such costly supports as housing and transportation. States may also find their efforts to move people out of institutions complicated by the scarcity of caregivers—both paid personal attendants and unpaid family members and friends—who are needed to provide the home and community services. Finally, there are concerns about the difficulty of establishing adequate programs to ensure that quality care is being provided in the different types of noninstitutional service settings throughout the community. We have reported on quality-of-care and consumer protection issues in assisted living facilities, an increasingly popular long-term care option in the community. States have the primary responsibility for the oversight of care furnished in assisted living facilities, and they generally approach this responsibility through state licensing requirements and routine compliance inspections. However, the licensing standards, as well as the frequency and content of the periodic inspections, are not uniform across the states. In our sample of more that 750 assisted living facilities in four states, the states cited more than 25 percent of the facilities for five or more quality-of-care or consumer protection problems during 1996 and 1997. Frequently identified problems included facilities providing inadequate or insufficient care to residents; having insufficient, unqualified, and untrained staff; and failing to provide residents appropriate medications or storing medications improperly. State officials attributed most of the common problems identified in assisted living facilities to insufficient staffing and inadequate training, exacerbated by high staff turnover and low pay for caregiver staff. The Supreme Court’s Olmstead decision left open questions about the extent to which states could be required to restructure their current long- term care programs for people with disabilities to ensure that care is provided in the most integrated setting appropriate for each person’s circumstances. Interpretation of the Olmstead decision is an ongoing process. While the Supreme Court held in Olmstead that institutionalization of people with disabilities is discrimination under the ADA under certain circumstances, it also recognized that there are limits to what states can do, given available resources and the obligation to provide a range of services for people with disabilities. Most states are responding to the decision by developing plans for how they will serve people with disabilities in less restrictive settings. These plans are works in progress, however, and it is too soon to tell how and when they may be implemented. State responses will also be shaped over time by the resolution of the many pending lawsuits and formal complaints that have been filed against them and others. The Supreme Court held that states may be required to serve people with disabilities in community settings when such placements can be reasonably accommodated. However, it recognized that states’ obligations to provide services are not boundless. Specifically, the Court emphasized that while the ADA’s implementing regulations require reasonable modifications by the state to avoid discrimination against the disabled, those regulations also allow a state to resist requested modifications if they would entail a “fundamental alteration” of the state’s existing services and programs. The Court provided some guidance for determining whether accommodations sought by plaintiffs constitute a reasonable modification or a fundamental alteration of an existing program, which would not be required under the ADA. The Court directed that such a determination should include consideration of the resources of the state, the cost of providing community-based care to the plaintiffs, the range of services the state provides to others with disabilities, and the state’s obligation to provide those services equitably. The Court suggested that if a state were to “demonstrate that it had a comprehensive, effectively working plan for placing qualified persons with mental disabilities in less restrictive settings, and a waiting list that moved at a reasonable pace not controlled by the state’s endeavors to keep its institutions fully populated, the reasonable modification standard would be met.” The single most concrete state response to the Olmstead decision has been to develop plans that demonstrate how the states propose to serve people with disabilities in less restrictive settings, as suggested by the Supreme Court. HCFA provided early guidance and technical assistance to states in these efforts. But most of these state plans are still works in progress, and it is too soon to tell how and when they will be implemented. To help states with their Olmstead planning activities, between January and July 2000 , HCFA issued general guidance to the states in developing “comprehensive, effectively working plans” to ensure that individuals with disabilities receive services in the most integrated setting appropriate. To encourage states to design and implement improvements in their community-based long-term care services, HCFA also announced a set of competitive grant initiatives, funded at nearly $70 million, to be awarded by October 1, 2001. (See app. II for details about these competitive grants.) In addition, HCFA made $50,000 starter grants available to each of the states and territories, with no financial match required, to assist their initial planning efforts. As of July 2001, 49 states (every state except Arizona) had applied for and received these starter grants, which must be used to obtain consumer input and improve services. As of September 2001, an estimated 40 states and the District of Columbia had task forces or commissions that were addressing Olmstead issues. According to the National Conference of State Legislatures (NCSL), which is tracking the states’ efforts, the goal for most of these states was to complete initial plans by the end of this year or early 2002. Ten states were not developing Olmstead plans, for a variety of reasons. NCSL reported that some of the states that were not planning already have relatively extensive home and community care programs and may believe that such planning is not necessary. As the result of a 1999 lawsuit settlement, for example, Oregon had developed a 6-year plan to eliminate the waiting list of more than 5,000 people for its waiver program serving people with developmental disabilities. Moreover, Oregon was the only state to dedicate more than half of its 1999 Medicaid long-term care spending to home and community-based services. Vermont also is not working on an Olmstead plan because it has implemented a range of activities over the years that are related to downsizing institutions and moving toward home and community-based care. On the basis of a preliminary review of about 14 draft Olmstead plans, NCSL reported that the contents are quite variable. A few plans are relatively extensive and well documented, including determinations of need, inventories of available services, funding needs, and roadmaps for what needs to be done. According to NCSL, other plans consist primarily of lists of recommendations to the governor or state legislature, without specifying how the recommendations are to be implemented, by which agencies, or in what time frame. It is too early to tell how or when the states will implement the steps they propose in their Olmstead plans. On the basis of the information collected by NCSL, it appears that few states have passed legislation relating to Olmstead—for example, appropriating funding to expand community residential options or authorizing program changes. As of July 2001, NCSL was able to identify 15 Olmstead-related bills that were considered in eight states during 2001, of which 4 were enacted. One bill simply provided for development of the state plan, while others appropriated funding, required a new home and community-based attendant services program, or proposed long-term care reforms. Increased state legislative activity is expected in 2002, as more Olmstead plans are completed. State responses to Olmstead also will be influenced by the resolution of the numerous lawsuits and formal complaints that have been filed and are still pending. Olmstead-related lawsuits, now being considered in almost half the states, often seek specific Medicaid services to meet the needs of people with disabilities. Lawsuits on behalf of people with disabilities seeking Medicaid and other services in community-based settings often are initiated by advocacy organizations. According to the National Association of Protection and Advocacy Systems (NAPAS), Protection and Advocacy Organizations report that about 30 relevant cases concerning access to publicly funded health services whose resolution may relate to Olmstead are still active. Plaintiffs in the cases include residents of state psychiatric facilities, developmental disabilities centers, and nursing homes, as well as people living in the community who are at risk of institutionalization. Their complaints raise such issues as prompt access to community-based services, the limitations of Medicaid waiver programs, and the need for assessments to determine the most integrated setting appropriate to each individual. It is difficult to predict the overall outcome of these active cases since each involves highly individual circumstances, including the nature of the plaintiffs’ concerns and each state’s unique Medicaid program structure and funding. According to a NAPAS representative, two recent cases in Hawaii and Louisiana illustrate some of the issues raised by Olmstead- related lawsuits and how they were resolved through voluntary settlements. The Hawaii case shows how one federal court addressed the state’s obligation to move people off its waiting lists at a reasonable pace, applying the Olmstead decision to people with disabilities who were not institutionalized. The plaintiffs claimed that Hawaii was operating its waiver program for people with mental retardation and developmental disabilities in a manner that violated the ADA and Medicaid law. The plaintiffs were living at home while on a waiting list for community-based waiver services—the majority of the plaintiffs had been on the waiting list for over 90 days and some for over 2 years. They could have obtained services if they had been willing to live in institutions, but they wished to stay in the community. The court found that Olmstead applied to the case even though the plaintiffs were not institutionalized. Hawaii argued that the plaintiffs were on the waiting list because of a lack of funds and that providing services for more people would cause the state to exceed funding limits set up in its waiver program. The court rejected the state’s argument and held that funding shortages did not meet the definition of a “fundamental alteration.” The court also found that Hawaii did not provide evidence of a comprehensive plan to keep the waiting list moving at a reasonable pace, suggested by the Olmstead opinion. In July 2000, the parties settled the case by agreeing that Hawaii would fund 700 additional community placements over 3 years and move people from the waiting list at a reasonable pace. The Louisiana case was filed in 2000 on behalf of people living in nursing homes, or at imminent risk of nursing home admission, who were waiting for services offered through three Medicaid HCBS waivers that provided personal attendant care, adult day health care, and other services to elderly and disabled adults. The plaintiffs claimed that the state was failing to provide services in the most integrated setting as required by the ADA. They also claimed that the state was not following Medicaid statutory requirements to provide services with reasonable promptness and to allow choice among available services. As part of a settlement of this case, Louisiana agreed to make all reasonable efforts to expand its capacity to provide home and community-based services and to reduce waiting lists in accordance with specific goals. For example, the state will increase the number of waiver slots by a minimum of 650 slots by 2002, with additional increases planned through 2005. The state also agreed to apply to CMS to add a personal care service option to its Medicaid plan, thereby making personal care services available to all eligible Medicaid recipients who are in nursing homes, at imminent risk of nursing home admission, or recently discharged. In addition, the state agreed to determine the status of persons currently on waiting lists for waiver services and to take steps to inform Medicaid beneficiaries and health professionals about the full range of available service options. Olmstead issues are also being addressed through a formal complaint resolution process operated by the Office for Civil Rights (OCR) within HHS. As part of its responsibility for enforcing the ADA, OCR receives and helps resolve formal complaints related to the ADA. When OCR receives Olmstead-related complaints from individuals and parties, it works through its regional offices to resolve them by involving the complainants and the affected state agencies. If a complaint cannot be resolved at the state and regional OCR level, OCR’s central office may get involved. Finally, if these steps are not successful, the complaint is referred to the Department of Justice. As of August 2001, no Olmstead-related cases had been referred to the Department of Justice. From 1999 through August 2001, OCR received 423 ADA-related complaints. These complaints generally involved a concern that people did not receive services in the most integrated setting. OCR reported that, as of August 2001, 154 complaints had been settled and 269 remained pending. These complaints had been filed in 36 states and the District of Columbia, with more than half filed in seven states. A recent analysis of 334 Olmstead-related complaints indicated that 228 complaints (68 percent) were related to people residing in institutions. The ongoing resolution of Olmstead-related lawsuits and complaints will help establish precedent for the types of Medicaid program modifications states may have to make to their long-term care programs. Meanwhile, it is difficult to generalize about the potential impact of the many ongoing cases because each case will be decided on its own facts. The extent of what federal courts will require states to do to comply with the ADA as interpreted in Olmstead will become more clear over time as additional cases are resolved. In the wake of the Olmstead decision, states may face growing pressures to expand services for the elderly and other people with disabilities in a variety of settings that allow for a range of choices. Despite the numerous activities under way at the state and federal levels to respond to this decision, the full implications of the Olmstead decision are far from settled. Ongoing complaints and legal challenges continue to prompt states to make incremental changes at the same time that they continue to frame states’ legal obligations for providing services to the disabled. States face challenges in determining who and how many people meet the criteria of needing and seeking services and also in balancing the resource and service needs of eligible individuals with the availability of state funds. This balancing of needs and resources will be an even greater issue in the coming years as the baby boom generation ages and adds to the demand for long-term care services. While Medicaid has a prominent role in supporting the long-term care services provided today, other financing sources also play an important role in our current system. These include private resources—including out-of-pocket spending, private insurance, and family support—as well as many other public programs. Finding ways to develop and finance additional service capacity that meets needs, allows choice, and ensures quality care will be a challenge for this generation, their families, and federal, state, and local governments. Mr. Chairman, this concludes my prepared statement. I will be happy to answer any questions you or the other Committee members may have. For more information regarding this testimony, please contact me at (202) 512-7114 or Katherine Iritani at (206) 287-4820. Bruce D. Greenstein, Behn Miller, Suzanne C. Rubins, Ellen M. Smith, and Stan Stenersen also made key contributions to this statement. In January 2001, HCFA announced a set of grant initiatives called “Systems Change for Community Living.” These grants are intended to encourage states to design and implement improvements in community long-term support services. Total funding for these grants is $70 million for fiscal year 2001. States will have 36 months to expend the funds. States and other organizations, in partnership with their disabled and elderly communities, were invited to submit proposals for one or more of these four distinct grant programs (see table 2). Agency officials reported receiving 161 separate applications for these grants for more than $240 million. The agency expects all grant awards to be made by October 1, 2001.

Summary: In the Olmstead case, the Supreme Court decided that states were violating title II of the Americans with Disabilities Act of 1990 (ADA) if they provided care to disabled people in institutional settings when they could be a appropriately served in a home or community-based setting. Considerable attention has focused on the decision's implications for Medicaid, the dominant public program supporting long-term care institutional, home, and community-based services. Although Medicaid spending for home and community-based service is growing, these are largely optional benefits that states may or may not choose to offer, and states vary widely in the degree to which they cover them. The implications of the Olmstead decision--in terms of the scope and the nature of states' obligation to provide home and community-based long-term care services--are still unfolding. Although the Supreme Court ruled that providing care in institutional settings may violate the ADA, it also recognized that there are limits to what states can do, given the available resources and the obligation to provide a range of services for disabled people. The decision left many open questions for states and lower courts to resolve. State programs also may be influenced over time as dozens of lawsuits and hundreds of formal complaints seeking access to appropriate services are resolved.