Community Integration of Older Adults with Mental Illnesses

Barriers and Recommendations

INTRODUCTION

Why are so many older adults with mental disorders consigned to segregated and institutional settings to receive the care they need? Why do so few receive the mental health services to which they are entitled in the community? In 2002 The Bazelon Center for Mental Health Law, with support by the Retirement Research Foundation, undertook a project to explore these questions because they have received so little attention in states= efforts to promote the community integration of people with disabilities required by the U.S. Supreme Court=s Olmstead ruling.^[1] To evaluate how states are fulfilling their obligations under the Americans with Disabilities Act (ADA) to address the rights of older citizens who have mental illnesses, identify the barriers that prevent older adults from receiving community-based mental health services and recommend steps to eliminate some of those barriers, Bazelon Center staff surveyed and interviewed state officials, mental health and aging advocates, providers and consumers of mental health and aging services, operators of specialty mental health programs for older adults, academics, consultants and others.^[2]

We focused on five states with varying demographic characteristics: Pennsylvania, Illinois, Alabama, Michigan and Nevada. Some longstanding obstacles were common to all five. These include older adults= reluctance to seek mental health services as traditionally configured, their inability to obtain transportation to service sites, their isolation from linkages to community networks, the general lack of knowledge among primary care providers and mental health providers about how mental health issues present in older adults, and policymakers= continuing lack of political will to support community programs for older adults with mental health needs. We also found policies and practices particular to individual states and tried to discern how these have operated to prevent the development of community-based mental health services for older adults, either by themselves or in conjunction with the common barriers. These states differ in their geographic and economic dimensions, and some have large older populations and some have traditions of progressive aging programs. Taken together, they offer a snapshot of how older adults with mental disabilities are faring in terms of accessing the services and supports that allow them to participate in their communities. Unfortunately, we found that, notwithstanding the rights of these citizens under the ADA and its Aintegration mandate,@ older adults with mental disabilities continue to encounter barriers that effectively exclude them from the mainstream.

Recently, several national reports have addressed the topic of older adult mental health services. The Surgeon General=s 1999 Report on Mental Health devoted a chapter to mental health issues that arise among this population, the ways mental health services are delivered to older adults and some of the general barriers that make it difficult for them to access community-based mental health services.^[3] In 2001, the federal Administration on Aging issued a companion document to the Surgeon General=s report devoted exclusively to the mental health needs of older adults.^[4] Rather than focusing on the nature, diagnosis and treatment of mental health problems, as does the Surgeon General=s report, the Administration on Aging report discusses the types of community-based services that could be used by older adults with mental health needs and some of the funding streams that can support those services. In April 2002, the Substance Abuse and Mental Health Services Administration and the National Council on the Aging released a publication that discusses successful models of aging-network partnerships with mental health, substance abuse and other service systems that have improved the provision of mental health and substance abuse services to older adults.^[5]

This report by the Bazelon Center has two purposes: 1) to highlight the policies and practices we found that have the effect of barring access by older adults to community-based mental health services, and 2) to suggest changes that could reduce the number of older adults with mental illnesses served in segregating institutions of various types and facilitate better (and, often, less costly) service models in community-integrating settings. We hope all states will give serious consideration to these suggestions in their planning to expand access to community-based services by people with disabilities.

THE OLMSTEAD PLANNING PROCESS

In 1999, the Supreme Court recognized in its Olmstead decision that unnecessarily institutionalizing individuals with disabilities is a form of discrimination that may violate the Americans with Disabilities Act. Every state has for many years administered services in segregated settings, such as state hospitals, nursing facilities and state centers for people with developmental disabilities. The Olmstead decision simply affirmed the integration mandate that had already been in federal regulations for almost a decade and was being largely ignored with regard to older adults who have mental illnesses. In the three years since the Olmstead decision, most states have begun some kind of planning process to facilitate the transfer of people with disabilities from these institutional settings to community-based services.

This planning has moved very slowly, however. As of this writing, few states have issued plans^[6] and many of those that have been prepared lack the specificity and budgetary allocations necessary to assure their implementation.^[7] In its most recent report on Olmstead implementation, the National Conference of State Legislatures reported that only three state legislatures had implemented some of the Olmstead plan recommendations in 2001, and even in those states, most of the Olmstead plan strategies had not yet been implemented.^[8] Now state budget shortfalls and declining state revenues are expected to further delay Olmstead implementation.^[9]

As a result, in most of the country the Olmstead decision has not produced a great expansion of community-based mental health services. While people with mental illnesses are less likely now than they were a decade ago to languish for years in state hospitals, many more are finding themselves on the streets, in jails and prisons, in nursing homes and in privately run board-and-care or Aadult@ homes that are often ill-equipped to meet their mental health needs.

What is most striking, however, about the slow progress in developing community mental health infrastructure is the lack of attention to the needs of one of the most underserved populations: older adults with mental illnesses. This is particularly troubling in light of the near-absence of existing infrastructure to serve this group effectively in the community.

OLDER ADULTS ARE UNDERSERVED

IN THE COMMUNITY MENTAL HEALTH SYSTEM

The Surgeon General=s Report on Mental Health estimated that almost 20% of individuals 55 and older experience mental disorders that are not part of normal aging.^[10] The rate of suicide in the U.S. is higher among older adults than any other segment of the population.^[11] While some older adults have lived with mental illnesses for years, many others develop mental disorders later in lifeC for example, depression, adjustment disorder or anxiety, which can result from the losses that often come with aging, such as loss of physical capacities, loss of social status and self-esteem and death of friends and loved ones.^[12]

Yet pathetically few older adults are served by the community-based programs of state mental health department. Most states have, at best, a patchwork of small projects to address the needs of older adults with mental illnesses in the community. According to the Surgeon General=s Report on Mental Health, the Aadvantages of a decisive shift away from mental hospitals and nursing homes to treatment in community-based settings today are in jeopardy of being undermined by fragmentation and insufficient availability of such services.@^[13] The federal Administration on Aging reports that individuals 65 and older, who constitute 13% of the national population, represent only 6% of the population receiving community-based mental health services nationwide.^[14] The data gathered in the states we studied confirm this deficit in services:

! In Illinois, where people 65 and older are 12.1% of the population,^[15] individuals in this age group represent only 2% of the population receiving community-based services funded by the Office of Mental Health in 2001-2002.^[16]

! In Pennsylvania, where adults 65 and older constitute 15.6% of the state population,^[17] state data show that they received 4.7% of the community-based mental health services provided by the counties in FY 1998/99, 4.4% of Medicaid fee-for-service community-based mental health services in FY 2000/01, and 2.3% of Medicaid managed care community-based mental health services in FY 2000/01.^[18]

! In Alabama, older adults constituted 8.6% of the population served by community mental health centers in FY 2001, and 13% of the general population.^[19]

According to the Administration on Aging, only half of the older adults who acknowledge mental health problems receive treatment from either mental health professionals or primary care physicians, and only 3% report seeing a mental health professional for treatment.^[20] Among older adults who do receive mental health services, many are not receiving other types of services that are necessary for them to remain in community settings. The Administration on Aging report cites a study in which 40% of community mental health providers identified basic services such as transportation and home help services as unmet needs for older adult clients.^[21]

Many of the reasons for such neglect of older adults by the mental health system are long-recognized. For example, because they grew up during times when extremely poor treatment of and negative attitudes toward people with mental illnesses prevailed, the stigma surrounding mental health treatment disproportionately affects older Americans and consequently they tend not to seek mental health services.^[22] Denial of mental health problems is also common among older adults, who often resist seeking mental health services for fear of losing control over their lives.^[23] Other problems include barriers to access such as lack of transportation, the cost of medical treatment and prescription drugs, the unavailability of mental health services in rural areas, the physical inability to come to an office to receive services and the isolation of older adults in general.^[24] Finally, as exemplified by the horrible geriatric back wards formerly ubiquitous in state psychiatric hospitals, the mental health service system has a tradition of viewing older adults as a drain on resources, unworthy of much beyond custodial care.

Furthermore, public funding of both mental health services and aging services is generally inadequate to meet existing needs, and segregation of funding streams results in fragmentation of services.^[25] Even individuals who are Medicaid-eligible have difficulty obtaining sufficient services, as most state Medicaid plans severely limit coverage of community-based mental health services, personal care services and home health services. Many states have Medicaid home- and community-based services waivers, which enable them to waive certain Medicaid requirements and provide services in community settings to a limited number of Medicaid recipients who would otherwise be served in a nursing facility, hospital or institution for individuals with mental retardation.^[26] Such waivers can be specifically targeted to serve older adults who need nursing care or care provided in a psychiatric hospital. No state, however, has specifically targeted a waiver to serve of older adults with mental illnesses. Some have targeted nursing-facility waivers to serve older adults, but those waivers focus primarily on nursing needs rather than mental health needs. While Medicaid typically cannot be used to address all the needs of older adults with mental illness in the community, states are required to cover nursing home services under Medicaid. As a result, Medicaid funding schemes create an incentive to place older adults with mental illnesses in nursing homes, where reimbursement for their care is readily available.

A number of other factors make it harder for older adults to receive mental health services. These include the lack of coordination and collaboration between the mental health and aging systems, gaps in services provided by each system, the shortage of individuals trained in geriatric mental health (psychiatrists, psychologists, social workers, home health workers, nurses and primary care physicians) and the lack of organized support and advocacy groups among older adults with mental illnesses.^[27]

Lack of expertise in geriatric mental health issues among primary care providers, mental health professionals and aging service professionals is a significant problem. Many older adults cannot successfully live in community settings simply because mental disorders are not properly recognized, diagnosed and treated, or are not treated appropriately for individuals in that age group. For example, primary care physicians have extremely low rates of recognition and identification of mental disorders in older adults^[28] and older adults are more likely to report somatic symptoms than psychological ones.^[29] It is often harder for untrained professionals to identify mental illnesses in older adults because they have a different clinical presentation than younger people;^[30] high comorbidity with other medical disorders also makes assessment and diagnosis harder in older adults, as symptoms of somatic disorders may mimic or mask signs of a mental illness.^[31] Furthermore, antipsychotic medications have an increased risk of damaging side effects, such as tardive dyskinesia, in older adults.^[32] Notably, mental health counseling and support interventions have been shown to result in substantial delays in nursing home admission for older adults.^[33]

GERIATRIC MENTAL HEALTH EXPERTS

ARE MISSING FROM OLMSTEAD PLANNING

In light of the significant national attention given to mental health and aging issues during the past couple of years, including recognition of the barriers listed above, it is puzzling that efforts to address these issues have been absent in Olmstead planning. A likely explanation is that people with experience in addressing the unique needs of elders with mental illnesses are seldom involved in the Olmstead planning process. Most of the individuals we interviewed who had expertise in older adult mental health issues had not participated in Olmstead planning processes. Advocates, providers and consumers of mental health services and a parallel set of stakeholders representing aging services have been involved, but they represent relatively isolated systems and do not bring to the table the combined perspective and experience of those who deal with older adult mental health issues.

Our visits and interviews for this project revealed that few people involved with the mental health system have had experience with the particular problems faced by older adults accessing mental health services, and few individuals involved with the aging system have experience with the problems faced by older adults with mental illnesses. Given the above-noted barrier, this is no surprise.

Most of the mental health advocates we interviewed (varying by state, but including stakeholders such as long-term care ombudsmen, protection and advocacy attorneys and members of state chapters of mental health advocacy groups) had not had occasion to focus on older-adult access issues. Despite the substantial numbers of older adults in their states who have mental illnesses and their history of segregation and neglect by public systems, many advocates were apathetic about the inattention of state Olmstead plans to older adults. They attributed it to the fact that they do not receive calls about aging issues. They tended to view the barriers to serving older adults in the community as the same barriers that keep people of any age from obtaining community-based mental health services. Most community providers had not taken the initiative of establishing appropriate partnerships with senior service systems to conduct effective outreach to elders with mental illnesses and to provide mental health services in settings that are not threatening to seniors or associated with stigma.

Similarly, aging-system workers tended to have relatively little experience with clients who have significant mental health needs. Most of the programs supported by aging departments and area agencies on agingCprimarily services funded by Title III of the Older Americans Act, such as meals, housekeeping services and case management, and Medicaid-funded nursing-facility waivers that provide home- and community-based services to individuals who require the level of care provided in a nursing facilityCare geared toward assistance with physical and medical problems. In many respects, mental health issues (and especially serious mental illnesses) are considered by the aging-services system to be ancillary matters that are the responsibility of other agencies. On the other hand, many aging advocates have a great deal of experience with individuals who have dementia. To an extent, this is by default, since mental health departments often do not provide services for people with dementia, justifying this by considering dementia a Acognitive impairment@ and not a Amental illness.@ Based on this array of factors, aging advocates have tended to view the barriers to serving older adults in the community primarily in terms of the difficulty of securing community-based nursing-facility waiver slots and services to respond to medical needs.

While aging-system workers generally refer individuals with known or obvious mental health impairments to the mental health system, there is seldom any mechanism to ensure recognition and assessment of less obvious mental health issues in older adults. Most important, there is usually no mechanism for bringing mental health workers into senior centers, individuals= homes, senior public housing and other settings where older adults may be assessed without having to go to a mental health clinic or follow up themselves on a referral. As confirmed by virtually every geriatric mental health specialist we interviewed, it is extraordinarily difficult to get older adults to seek out mental health services themselves. And even if they do seek services in community mental health programs, they are likely to find themselves assigned low priority and offered little beyond medications.

The lack of coordination between the aging and mental health systems was strikingly reflected in the responses to a written survey we sent out as part of this project. We received many responses from mental health advocates and providers, state and area agencies on aging, senior services providers and others stating that they were unable to answer questions about community-integration planning for older adults with mental illnesses because they were not involved with such efforts. Follow-up interviews with many respondents revealed that they did have some role in community-integration planning, but did not focus on the needs of older adults with mental illnesses. Respective mental health and aging advocates were frequently unaware of the existence of, or work done by, coalitions involved in efforts to improve mental health care for older adults.

A large number of the individuals interviewed, including some state officials, noted that many older adults with mental disabilities are being served in nursing facilities, psychiatric hospitals and other institutional settings only for lack of community services. Many of them could be served in more integrated settings, but are institutionalized because, among other things, public funding is more readily available to support services in the institutional settings. Yet older adults and family caregivers generally prefer community-based services, and providing these services has significant potential to reduce costs.^[34] Accordingly, it would make sense to address some of the barriers to providing community-based services for this population as part of Olmstead planning or as part of a discrete effort to reduce unnecessary institutionalization.

States= awareness of the problem predates the Olmstead decision. For example, in 1997, Illinois= legislatively mandated Advisory Committee on Geriatric Services prepared a report discussing the barriers to older adults= obtaining mental health services and making recommendations to address those barriers.^[35] The committee=s study documented a tremendous unmet need for older adult mental health services. Seventy-two% of the respondents to a survey of mental health agencies and 51% of the respondents to a survey of senior services agencies reported that they encounter elderly individuals requiring mental health services on a daily or weekly basis.^[36] Respondents reported significant barriers in serving this population, with the top reasons being refusal of services, unavailability of services, waiting lists for services and lack of transportation.^[37] We hope the Olmstead requirements to develop and implement a plan to reduce unnecessary institutionalization will provide the impetus for all states to demolish the barriers that deprive older adults of access to community-based services.

BARRIERS TO COMMUNITY INTEGRATION

The summary that follows is based on our written survey, a review of various reports and state policies, interviews with numerous stakeholders and site visits. The appendix includes more detailed state-by-state reviews of the significant factors affecting achievement of the aims of the integration mandate for older adults with mental illnesses, including dementia. Our recommendationsCboth within these reviews and in the next sectionCare not prescriptions for how individual states ought to proceed with regard to identified issues, but rather an indication of the kind of ongoing deliberations we had hoped to see (but generally did not) as states grapple with reforms to promote community living for older adults with mental disabilities. Our hope is that these examples will spur just such deliberations, not only in the five states we reviewed but throughout the country, as advocates and other concerned stakeholders examine the structural factors in their states= service and reimbursement systems that work against the goal of community integration.

Much of the information from interviews and survey responses across all five states studied was consistent with the findings of the federal reports referenced above. The issues common to every state were:

! stigma

! lack of knowledge

! lack of coordination between mental health and aging systems

! lack of transportation and in-home services

! inadequacy of Medicaid and Medicare

! lack of housing

! lack of outreach to older adults

! inadequacy of managed care coverage

! bias of public funding schemes toward institutional care

! limits on nursing home preadmission screening

! exclusion of dementia from state mental health programs

! bureaucratic stumbling blocks

! delays in Olmstead planning

Responses to our written questionnaire suggest that institutionalized older adults with mental illnesses receive low priority in integration planning.^[38] Fully 100% of the respondents who ranked groups in order of priority listed either individuals in nursing facilities or individuals 65 and older in psychiatric hospitals as least likely to receive attention in integration efforts.^[39] All of the responses that listed individuals in nursing facilities with the lowest priority listed people 65 and over in psychiatric hospitals with the second lowest priority.

Survey recipients were asked to rank the barriers to community integration of older adults in order of significance. The four barriers identified as most significant were lack of funding (listed as one of the top three by 100% of respondents), lack of political will, lack of affordable housing and lack of a trained workforce.^[40] The surveys also suggested that states have not made much effort to explore funding initiatives or policy changes for expanding community-based services for older adults with mental illnesses.

The interviews we conducted with stakeholders yielded particularly useful information. In addition to common barriers, we found specific policies and practices that have the effect of frustrating implementation of change consistent with the Olmstead decision and preventing older adults= access to community-based mental health services. Some of these policies and practices may be unique to these states, while others are known to occur more widely. Taken as a whole, they paint a ground-level picture of the substantial challenges the nation faces in reversing the continued segregation of older adults with mental illnesses and their relegation to the margins of society.

STIGMA

Interviewees in all states reported barriers created by stigma among older adultsCand often their family members as wellCresulting in the need to offer mental health services in a non-threatening manner and environment. Providers noted that referrals of individuals to their programs overwhelmingly come from sources other than the clients themselves. Most come from other service agencies, from the individuals= primary care physicians, and from police.

A specialty provider of older adult mental health services in one of the states recalled a client whose wife turned and walked away any time he mentioned to others that he was participating in a mental health program. She noted that clients often use terms such as Acrazies@ and Anuthouse@ to describe the program, but come anyway only because they have seen that the program=s benefits outweigh the negativity associated with it.

LACK OF KNOWLEDGE

Another commonly cited barrier is lack of knowledge about geriatric mental health among primary care providers, nursing facility staff and mental health professionals. For example, many of these individuals do not recognize depression in older adults, particularly because it may manifest itself in a way similar to dementia. Such depression is sometimes referred to as Apseudo-dementia.@ Advocates report that older adults are sometimes turned away by psychiatric emergency services simply because they are older. They are frequently seen as having dementia because of their age and too often a proper evaluation of their actual mental health needs is not done.

Many nursing facility staff also do not know how to spot depression in their residents, advocates note. They do not have time or experience to identify residents with mental health needs properly and frequently have no desire to do so. Doctors, too, often lack the expertise, time or desire to diagnose mental health issues in older adults. Sometimes this is due to ageismCa feeling that older adults are at the end of their lives and it is not worth the time to treat mental health issues. Many individuals cited the lack of incentive for medical schools to offer geriatric mental health courses.

One of the poorest states in the country, Alabama has not been known for offering an especially rich package of publicly funded community mental health services. Yet the state has managed to serve a higherpercentage of older adults than any of the other states we studied, and a higherpercentage than the national average. Part of the reason may be the statewide commitment to providing training in geriatric mental health issues to individuals in a variety of settingsCcommunity mental health providers, assisted-living providers, area agencies on aging, senior center staff, nursing home staff, family caregivers, students and others.^[41] (Alabama=s training materials have been used by other states.) While the availability of services is more limited than in many other states, the extensive train-the-trainer sessions have probably contributed to the fact that, relatively speaking, a surprisingly high percentage of older adults are receiving some community-based mental health services.

While the Alabama trainings reach a wide variety of individuals in the aging, mental health and nursing facility systems, the training program runs on a limited budget (though volunteer hours are used as well), and its impact on mental health and aging services is necessarily limited. One area agency-on-aging director noted that, although the agency had a dementia-education trainer on staff, most of the staff at the senior centers and staff who answer telephone calls do not have the knowledge to identify clients with potential mental health issues and do not know what resources exist. A legal advocate for elders noted that she would not have any idea what issues to consider in dealing with clients with mental illnesses, and suggested that a short guide laying out the main issues that arise for elders with mental health needs and listing existing resources would be helpful.

What was especially striking in our state visits was how little information about the particular barriers faced by older adults in need of mental health services has come to the attention of either mental health or senior advocates. Because these issues have been so infrequently discussed beyond a small subset of advocates and providers, knowledge of them has not filtered out to the advocates who play a crucial role in assisting individuals in obtaining mental health services and aging services.

LACK OF COORDINATION

Individuals in all states described a lack of coordination between mental health and aging systems in addressing the needs of older adults. Many cited as part of the reason both types of agencies= reluctance to take on the complexities of serving older adults with mental illnesses. The services provided by each set of agencies are difficult to provide in isolation, without addressing the other needs of an older adult with a mental illness. Many mental health centers are reluctant to serve this population because of the practical difficulty of providing case management for older adults with complex medical issues, such as congestive heart failure, arthritis, chronic obstructive pulmonary disease and understanding their unique mental health needs.

States have taken various steps to bring the two types of agencies together. In some Pennsylvania counties, teams composed of representatives from the area agency on aging and the county behavioral health office meet periodically to discuss policies and practices affecting services for older adults with mental illnesses, and staff from both agencies work together to assess individuals and coordinate services. Pennsylvania advocates, providers of geriatric mental health services and state officials agree, however, that the existing programs are nowhere near sufficient to address the needs of older adults with mental illnesses.

In parts of Illinois, area agencies on aging are quite successful in coordinating with mental health agencies to provide appropriate services for their clients. In other sections of the state, howeverC particularly rural areasCcoordination is extremely poor. Some aging-services providers have had trouble persuading mental health providers even to come into their area. Often it is difficult to determine what services exist in the area, as many aging-services providers have no centralized list of resources.

Some of Alabama=s area agencies on aging have recently begun to include mental health services in their nursing-facility waiver programs. Ironically, mental health center outreach teams have sometimes found themselves met at an individual=s doorstep by a competing team from a senior services provider. While recognition of the need to integrate mental health and aging services is a positive development, it is unfortunate that in some areas multiple agencies compete to provide services while in others no one can provide needed services. Some mental health providers warn that senior services providers should not be in the business of offering their own mental health services instead of reaching out to mental health centers to coordinate services. While these senior service agencies hire and bill Medicaid for psychiatric social workers and psychiatric nurses, they lack the structure to provide adequate consultation and supervision for their mental health workers, according to some.

Other than serving individuals in Medicaid waivers, however, most of Alabama=s area agencies on aging have not focused on the mental health needs of older adults. Few senior programs are funded by Older Americans Act money specifically to address older adults= mental health needs. One area agency-on-aging director discussed a very successful adult day health program for individuals with Alzheimer=s disease in TuscaloosaCmade possible by grant money and providing services on a sliding fee-scale basisCbut noted that there was little else in the way of services geared toward older adults with mental disabilities.^[42]

Partnerships between mental health and aging agencies are difficult to develop without a sustained commitment to support them on at least a local government level. Separate funding streams for Medicaid waivers, state and county mental health services, aging services funded through the Older Americans Act, Medicare and Medicaid state plan services make it difficult to avoid fragmentation. In Alabama, funding for specialty older adult mental health services comes primarily from community mental health centers. In Nevada, funds for the state=s primary specialty program come from the Division of Aging. In these states, more collaboration between mental health and aging would doubtless facilitate better services. Nonetheless, we found examples of collaborations between mental health and aging systems, many of which have successfully used joint funding strategies.

Pennsylvania has used federal mental health block grant money to fund six pilot programs designed to provide outreach, assessment, service coordination and outcome monitoring for older adults. Additionally, various small specialty programs, primarily in the Philadelphia and Pittsburgh areas, provide an assortment of community-based services: in-home evaluation and treatment; evaluation, individual, family and group therapy and other services based in senior centers; integrated programs where older adults receive mental health and medical care in the same place; mental health center-based geriatric services; and Medicare-funded partial hospitalization programs in senior centers. Most of these initiatives are financed by county-based mental health funding and funds from area agencies on aging.

Illinois has a number of specialty programs serving older adults with mental illnesses in different areas of the state. Most of these provide in-home services, mental health services in senior centers and other settings, and/or day treatment programs, and are supported by a combination of Medicaid funding, small grants from the Department of Aging, very limited Medicare reimbursement and, in some cases, private-foundation grants. Most of the specialty providers described a tremendous struggle for funding to maintain their programs from year to year.

Michigan has a few specialized community programs designed for older adults with mental illnesses, including small residential programs. Some provide mental health services to individuals in Ahomes for the aged,@ which are licensed to serve older adults who do not need a nursing facility level of care. A few specialty programs have assertive community treatment teams for older adults, and there are some limited mental health outreach programs as well. Some mental health agencies have aging specialists on staff. These specialty programs are funded primarily by Medicaid and Medicare dollars. One of the specialty program operators noted that the state mental health system has generally made efforts to reinforce collaboration between primary care physicians and mental health agencies.

INADEQUACY OF MEDICAID AND MEDICARE

While Medicaid and Medicare reimbursement may help pay for some of the services needed by older adults with mental illnesses, limited coverage under state Medicaid plans, state licensure requirements for Medicaid and Medicare providers, and the combination of different Medicaid rules often makes it difficult or impossible to use these programs as the primary funding streams for a specialty program.

Medicare, in addition to requiring a 50% contribution from clients for outpatient mental health services (as opposed to a 20% contribution for other services), requires that a program have a psychiatrist on staff and use a licensed clinical social worker for services that are frequently provided by less skilled staff. Furthermore, Medicare covers a very limited array of mental health services. Medicaid is a joint federal-state program and its rules differ from state to state; some of the restrictive rules and policies are discussed below. In some states, such as Pennsylvania, almost all of the specialty programs are funded by sources other than Medicaid and Medicare, relying instead on local dollars or area agency-on-aging funds.

Many older adults with mental illnesses are not eligible for Medicaid because the income-eligibility levels are so low in some states. Alabama, according to providers, has the most stringent eligibility standards in the nation. As a result, very few people qualify for Medicaid. Individuals whose income is slightly too high can receive only state- and local-funded services, which are sparse and generally inadequate to meet needs. Several informants reported that older adults who do not qualify for Medicaid are deterred from seeking community mental health services because they cannot afford the cost of an initial assessment, which runs approximately $105. One community mental health center has suggested that centers unable to handle the needs of older adults contribute instead to a pooled fund that would enable the centers with geriatric programs to expand their capacity and serve other catchment areas.

A major barrier to developing community-based services for older adults with mental illnesses stems from restrictive licensure policies for Medicaid and Medicare providers. For example, in Pennsylvania Medicare will only pay for a licensed clinical social worker (LCSW) to provide social work services, although many specialty providers find it extremely difficult to budget for LCSWs to do work that is routinely done by other social workers. One specialty provider organization had hoped to become a Medicaid provider but was surprised to learn that it could not obtain Medicaid licensure because it would be required to have site-based mental health services and a psychiatrist on staff. The program, cited by SAMHSA as one of the successful models in the area of geriatric mental health, contracts with a geropsychiatrist rather than having a psychiatrist on staff in order to make the program economically feasible. Finally, Medicaid=s coverage of mental health visits is more limited than what most of the program=s clients require.

A problem noted by various specialty providers is the restrictiveness of Medicaid billing rules. For example, Illinois providers receive a daily reimbursement rate for psychosocial rehabilitation programs and cannot bill Medicaid for additional mental health services provided during the hours the program is supposed to operate. However, only five or six services are billable under the psychosocial rehabilitation category, including assessment, treatment plan development, individual and group psychosocial rehabilitation services, and client-centered consultation. Providers stress the tremendous importance of using case managers to assist older adults in these programs, but case management is not one of the reimbursable services in this category. Providers must either swallow its cost themselves or find other ways to provide it.

Illinois providers have had difficulty obtaining Medicaid reimbursement for assertive community treatment, one of the important tools in serving older adults with mental illnesses if for no other reason than its outreach mode of service delivery. While assertive community treatment should be a voluntary, person-centered program, multiple outreach efforts are often necessary to engage a person in services. Unfortunately, this service realityCand the incentive for providers to actively engage reluctant, at-risk individuals before involuntary hospital care may become necessaryC is ignored by state policy that does not allow for billing of outreach visits when the individual refuses to see the worker.

Specialty providers in Illinois note the need for high-quality staff to address the complex needs of this population and the difficulty of keeping trained staff with the low reimbursement rates provided by Medicaid and Medicare. One provider noted that the amount Medicaid pays for a psychosocial rehabilitation program is approximately half of what is needed to operate her program. Another observed that Medicare assumes that a number of activities will be bundled into the services it reimburses, but the rates are insufficient to sustain that array of activities.

Another frustrating problem has arisen in Alabama as a result of competition to provide services. The Medicaid agency has refused to pay for case management services provided by both the area agency on aging and the community mental health center, on the ground that these services are duplicative, even though the services provided by each system are quite different. In the mental health system, case managers typically ensure that an individual is taken grocery shopping and to doctors= appointments, assisted with money management, and provided other related services. Case managers in the aging system ensure that an individual receives homemaker services, such as assistance with cleaning the house and light cooking. Upon being told by the Medicaid agency that case management services cannot be billed by more than one agency, community mental health center teams have withdrawn, leaving clients upset because case managers with whom they have developed a relationship are gone and they are no longer receiving needed services. The state Medicaid agency could reorganize billing codes to permit reimbursement for the different types of case management so that older adults with mental illnesses can receive the full array of services to which they are entitled.

A recent decision by the Michigan Medicaid director imposes a serious potential barrier to accessing community-based mental health services.^[43] The decision states that the bulk of the community-based mental health services that the state provides through its Medicaid managed care waiverCsuch as peer-directed services, family skills, housing assistance, extended observation beds, wraparound servicesCare not entitlements under the Medicaid program, but rather discretionary services that managed care entities are encouraged to provide out of cost-savings achieved with managed care. This decision seems to contradict basic Medicaid principles, which dictate that federal Medicaid reimbursement received by a state must be used to provide entitlement services. Yet the state is using federal Medicaid match money, which is included in capitated payments to managed care entities for Medicaid recipients, to fund services that may be provided or not, at the discretion of the managed care entity. This policy, which is likely to be challenged, essentially converts much of Michigan=s community-based Medicaid mental health program into a block grant program and creates tremendous problems for enforcing the right to receive Medicaid mental health services.

The array of services provided under states= Medicaid plans is typically inadequate to serve the mental and physical needs of older adults with mental illnesses who could live in the community. Many states have chosen to adopt Medicaid waivers allowing them to provide services to people who would otherwise be served in a nursing home setting. Because these nursing-facility waivers are designed to serve individuals who have nursing needs, they focus primarily on those needs and frequently provide little in the way of mental health services. Additionally, many states cap the permissible costs under their waivers at less than 100% of what it would cost to serve people in an institutional setting. These cost caps make it impossible for many waiver-eligible older adults to remain at home and receive the level of care they need.^[44]

Michigan=s nursing-facility waiver also has caps that are way below the cost of nursing home care and is geared primarily to serving those with physical disabilities. Waiver agents can, however, purchase mental health services for clients. Currently, the AMI Choice@ waiver has been frozen at 11,000 individuals, although it was intended to serve 15,000, and no new admissions have been made. Waiting lists are not permitted. A pending lawsuit challenges the freezing of the waiver and the imposition of cost caps for participants. Increasing the cost caps for the waiver to 100% of the cost of nursing facility care and allocating funds to reopen admissions to the waiver would allow the state to serve older adults and individuals with disabilities more cost-effectively than in nursing facilities. Waiting lists should also be maintained to keep track of those who have sought but been unable to receive waiver slots. Waiting lists are crucial to an organized planning process to move people into community-based services.

Illinois also has a nursing-facility waiver for older adults, administered by the Department of Aging. It provides very limited servicesCup to four hours per day of personal assistance, meal preparation and adult day services. In contrast, the home-care waiver operated by the Office of Rehabilitative Services for individuals under 60 provides up to 24 hours per day of home-care services. Advocates note that the personal aides in the aging waiver are not trained to deal with individuals with mental illnesses. Moreover, most adult day services will not take people with dementia. Illinois also licenses assisted-living facilities, but these do not serve Medicaid clients, and in any event are generally not staffed adequately to address the needs of many individuals with mental illnesses. Expansion of the service hours in the aging waiver would likely enable the state to serve many individuals in less expensive home settings instead of in nursing facilities. The state might also consider creating a Medicaid nursing-facility waiver that is targeted to older adults with mental illnesses. This would create a single funding stream designed to ensure provision of the array of services required by Medicaid-eligible older adults with mental illnesses.

A major difficulty facing older adults who need mental health services in Pennsylvania is that virtually no publicly funded community-based options are available for older adults with both medical and mental health needs. Medicaid covers only 15 half-hour visits by a home health aide each month. Apart from their own homes, the options available to older adults include personal-care homes and services in Pennsylvania=s home- and community-based Medicaid waivers for individuals who meet a nursing home level of care. Because the state prohibits individuals who require a nursing-home level of care from being served in personal-care homes, the only option for people who need nursing care is nursing-home placement, unless they are fortunate enough to obtain one of the limited slots in the Medicaid waivers. A pilot program eliminating the prohibition on providing waiver services in personal-care homes currently serves 86 older adults with mental disorders, most of whom have a mental health diagnosis. The program has been able to provide integrated services to meet both the mental health and medical needs of individuals in personal-care home. Many other states permit waiver services to be provided in personal-care homes and assisted-living residences, and Pennsylvania could also pass legislation to do so.^[45]

Nevada has Medicaid home- and community-based waivers that serve people with physical disabilities and older adults and are primarily geared toward medical needs. According to the National Conference of State Legislatures, the state ranked 49^th in home- and community-based waiver spending in FY 2001, with 75% of its Medicaid long-term care funds going to institutional care.^[46]

Other resources in the state are limited. Medicaid provides some funding for assertive community treatment teams, targeted case management and counseling. Case management services are covered only for a short period of time, however. The aging system funds some caregiver resource centers and Alzheimer=s clinics. Assisted-living facilities are not publicly funded.

Another Nevada program provides assessment and service coordination on a short-term basis to older adults with mental illnessesCprimarily depression. The program, which is attached to an inpatient geropsychiatric facility, began as a partial hospitalization program but no longer provides partial hospitalization due to Medicare restrictions. It is primarily financed by Medicare, which limits the types of services that can be provided. Medication, for example, is not covered unless the clients are also Medicaid recipients. The program includes a licensed clinical social worker, a part-time nurse and a psychiatrist. According to its staff, the program does not make any money and is fortunate when it breaks even. It survives only because the inpatient program attached to it generates sufficient revenue to support both programs, given the higher Medicare reimbursement rates for inpatient psychiatric services. Individuals with dementia are not served. Additionally, several very small programs funded by private foundations provide group counseling to seniors.

LOGISTICAL BARRIERS SUCH AS LACK OF TRANSPORTATION AND IN-HOME SERVICES

A universal barrier is the unavailability of transportation for older adults to access mental health services, particularly in rural areas. A director of an area agency on aging in Alabama noted that her agency provided transportation for older adults to get to needed services, but said that service was limited for people located extremely far from services. Furthermore, some older adults are not able to leave their homes and many programs do not provide in-home mental health services.

Sometimes this is the result of state policy. For example, Pennsylvania has a Medicaid licensure rule that requires mental health providers to provide site-based services (i.e., within a clinic setting). A Pennsylvania program cited as a national model provides mental health services in individuals= homes and at senior centers, but does not provide site-based mental health services because it has found that most seniors are unlikely to come to a mental health center to receive services, especially physically frail elders, for whom such travel is difficult.

Nevada medication clinics may take between two and three months to schedule an appointment with clients. The state has very few mental health clinicsCfor example, the Reno area has only one. Rural areas have extremely little in the way of mental health services. To receive mental health services, clients must ordinarily come into the clinics, an obvious barrier for many older adults. The state has no mobile crisis unit and only very limited emergency mental health services.

LACK OF HOUSING

The lack of affordable housing is a major barrier to obtaining community-based services for individuals with mental illnesses of every age in every state. Housing is generally not covered by public funding streams, and payments for housing generally come from individuals= SSI checks or other sources. However, these dollars are generally insufficient. In Nevada, the cost of housing has increased sharply in recent years, but subsidized housing is scarce and waiting lists for Section 8 certificates are long.

Providing small increases in supplemental payments to SSI recipients to assist them in securing housing may bring cost savings to the state, provided these payments are lower than the additional costs that the state would otherwise pay to house these individuals in institutions or nursing facilities.

Lack of housing is one of the reasons Illinois officials have been reluctant to move individuals out of institutions, even if mental health services are available in the community. The public housing authority in Chicago apparently has thousands of vacant units, but these are unavailable because of a large-scale renovation project. The state=s largest mental health provider indicated, however, that while it would be impossible to find housing immediately for inappropriately institutionalized residents immediately, over time the state could certainly find the necessary housing to place a large number of those individuals in community settings.

INSUFFICIENT OUTREACH

Outreach is critical to create for older adults entry points to mental health services. One effective approach is the Agatekeeper@ model developed in Washington State, where community members such as meter readers, postal employees and store clerks are trained to identify and refer at-risk older adults who may need mental health services. This has proven an excellent way to reach elderly people living in their own or family members= homes, but it does little for residents of the congregate-living arrangements that house a large number of older adults with mental illnesses who have either remained undiagnosed or are not receiving adequate mental health care. Naturally, it also requires that services actually be available to the people identified. Many people in Pennsylvania, for example, were placed in personal-care homes during the era when state hospital closures resulted in the Adumping@ of patients into the community without appropriate planning for their needs. They are unnecessarily at risk of institutional placement as their mental health deteriorates.

Pennsylvania has funded six pilot programs based on the gatekeeper model. However, because the state=s Department of Aging does not send anyone into personal-care homes to assess residents= needs, residents seldom have any way to connect to mental health services. Advocates report that some personal-care home operators do arrange for appropriate mental health services for their residents, but many do not, and in some homes, residents= mental health needs are treated primarily through the use of medication. In any event, there is no effective mechanism for the aging or mental health systems to discover whether residents= mental health needs are being appropriately met.

While Alabama=s Bureau of Geriatric Psychiatry trains mental health and aging workers to recognize mental health issues in older adults, the Bureau=s program does not have an outreach component that targets older adults themselves. Accordingly, the programs do not reach isolated seniors who are not connected with senior services. Many mental health centers also do not target outreach to older adults, and serve them only when they actually contact the mental health center for services. As one mental health center director put it, these centers will provide help but Athey aren=t going to cross the street looking for@ seniors to serve. Because the initial contact with community mental health centers is rarely made by older adults themselves, but is made overwhelmingly by primary care physicians and other agencies, a passive approach does little to address older adults= needs.

Funding is needed at the state or local level for more outreach programs to reach older adults with mental illnesses in Alabama, including those in personal-care homes. Many current outreach efforts are targeted to individuals in senior centers but, as one state official noted, Aonly well elderly attend senior centers@ and older adults with serious mental illnesses generally do not access services provided by area agencies on aging. Outreach efforts need to reach many more individuals.

Nevada has even fewer potential service system entry points for older adults with mental illnesses because the state has no network of local area agencies on aging. While very few providers serve this population, the state itself has created the Mental Health Outreach Program to serve individuals 60 and older who experience symptoms of mental illness. The program provides evaluation, counseling and case management primarily in individuals= homes but also in congregate-living facilities. The program was initially funded by Older Americans Act money through the Division on Aging. Recently, it received a supplemental grant from the state tobacco settlement fund, part of which is earmarked to assist seniors in maintaining independence. The program relies on a team composed of an individual with a masters degree in gerontology, a licensed clinical social worker and a person with a masters in social work. Yet the outreach program is limited both in geographic scope and in services. According to program staff, it is the state=s only outreach targeted toward older adults, and perhaps the only one targeted toward individuals with mental illness.

INADEQUACY OF MANAGED CARE COVERAGE

While many had hoped that managed care would offer better coordination of services for individuals with complex needs, the overall experience with managed care coverage for older adults with mental illnesses has been problematic. Many people reported that HMOs have been very reluctant to cover innovative specialty programs for this population. In Pennsylvania, advocates and providers described how frequent failures of coordination in a Medicaid managed care program resulted in older adults= being shipped across town to a mental health clinic, only to find out that the geriatric specialist was not there at the time the person was sent.

In Michigan an advocate noted that the managed care system currently in place for Medicaid recipients with mental illnesses and developmental disabilities who receive community-based services creates a financial incentive for placement in nursing facilities. The managed care entities responsible for Medicaid clients receive a capitated rate for each client and must pay for community-based services that the individual is determined to need. If the individual needs nursing-facility services, however, then the managed care entity does not pay.

PUBLIC FUNDING OF INSTITUTIONAL CARE

Across all the states studied, sources noted that many older adults with mental illnesses are placed in nursing facilities only for lack of public funding for appropriate community-based options. The incentive to place people in nursing facilities is that Medicaid and Medicare will reimburse for care provided in these facilities. In addition, Medicaid and Medicare are available to cover hospital care for older adults, including geriatric psychiatric care.

In response to a survey question asking whether states are redirecting funds previously invested in psychiatric hospitals or nursing facilities to community-based services for this population, or using Medicaid or other avenues to expand community-based services, the overwhelming majority of respondents either indicated that no such efforts were being made or left the question blank. Some mentioned cuts in Medicaid community services. Alabama state officials noted that redirection of funds to community services for individuals with mental illnesses was required by the settlement in Wyatt v. Sawyer, and indicated that Medicaid community-based services were being or had been expanded. A Nevada state employee referenced a pending legislative initiative to study long-term care needs and establish strategic plans for seniors and individuals with disabilities. In replying to a separate question, some survey responses noted expansion of Medicaid optional services in Michigan,^[47] but also said that admissions to Michigan=s nursing-facility waiver have been shut down.

Advocates and providers in Alabama note that, without a primary caregiver at home, few older adults are able to remain at home because publicly funded home health services would not be sufficient to support them there. Personal-care services are not part of Alabama=s Medicaid plan. By contrast, Medicaid and Medicare funding is readily available for people placed in nursing facilities and for those 65 and older in psychiatric hospitals. Many advocates indicated that the politically powerful nursing home industry has made it extremely difficult to develop more community options because of concern about losing clients.

Pennsylvania, the state with the second-oldest population nationally,^[48] devotes 90% of its spending on long-term care (itself two thirds of the state=s Medicaid budget) to nursing-facility services.^[49] Compared to the national average, Pennsylvania=s taxpayers spend 40% more per capita on nursing-home services and 92.6% less per capita on home- and community-based services.^[50] The reason is primarily inadequate public funding for long-term care services in the community.^[51] The average Medicaid cost to the Commonwealth of providing home and community based services in 1998 was $12,780 a year, while the annual cost to provide the same services in a nursing facility was $31,653.^[52] Accordingly, revisiting some of the policies and practices that keep older adults from obtaining community-based mental health services may result in cost savings while also providing preferred services consistent with people=s Olmstead rights.

We note that Illinois was recently ranked the fourth worst state in terms of integration of people with all types of disabilities, according to a list compiled by the disability-rights group ADAPT. ADAPT=s Aten worst@ list was announced on October 8, 2002 and was based on various sources, including state long-term care data and recommendations by advocacy groups.^[53] The National Conference of State Legislatures reported that in 2001, 86% of Illinois= Medicaid spending on long-term care went to institutional care and only 14% went to home- and community-based services.