Community Integration for Older Adults with Mental Illnesses: Overcoming Barriers and Seizing Opportunities

Progress in the treatment of mental disorders and in the care of older adults means that older adults with serious mental illnesses no longer must be consigned to live out their lives in institutional care. Newer and potentially more effective medications; innovative collaborations among mental health, primary care, and elder services providers; and programs that feature outreach and multidisciplinary treatment all hold promise for this vulnerable group of individuals.

This section highlights successful practices and innovative approaches for older adults in the community who have serious mental illnesses. Both program-level and system-level strategies are discussed.

Principles of Long-Term Care

Increasingly, long-term care for older adults with serious mental illnesses is conceived of as a range of services needed to maintain an individual in the least restrictive setting possible (U.S. Department of Health and Human Services, 1999). The emphasis is on “aging in place” at home or in the community. Older adults with serious mental illnesses are recognized as people first.

The U.S. U.S. Administration on Aging (2001) notes that any system of care for older adults with serious mental illnesses must be based on the principles of community mental health practice, which include the following (pp. 21-22):

● Services should be accessible and culturally sensitive to those who seek treatment.

● Services should be accountable to the entire community, including the at-risk and underserved.

● Services should be comprehensive, flexible, and coordinated.

● Continuity of care should be assured.

● Treatment providers should utilize a multidisciplinary team approach to care.

In a study of community-based mental health services for older adults, researchers found that successful programs shared the following features (Knight & Kaskie, 1995, p. 237):

● All emphasize accurate diagnosis of older adults.

● All are interdisciplinary and treatment focused.

● All use active case-finding methods and community education approaches to bring clients in.

● All collaborate actively with other agencies that serve older adults.

● All deliver mental health services to older adults at home.

Researchers also found that services to older adults must be affordable and culturally appropriate. Many of these principles are highlighted in the discussions that follow.

Evidence-Based and Promising Practices

In many ways, community-based mental health services for older adults are much the same as services for their younger counterparts. These services include outpatient psychotherapy, partial hospitalization/day treatment, crisis services, case management, and wraparound services. However, because older adults are particularly vulnerable by virtue of comorbid medical illnesses, poverty, and isolation, services such as outreach and home-based care take on special importance. Reviews of the research literature cite a significant number of evidence-based practices for older persons (Bartels, Dums, et al., 2002). Implementation of evidence-based practices was cited as one of the primary recommendations for improving the quality of mental health care for older Americans by the Older Adults Subcommittee of the President’s Commission on Mental Health (Bartels, 2003). A range of evidence-based and promising mental health practices that meet the special needs of older adults are highlighted below. Outreach

For a host of reasons discussed elsewhere in this report, including stigma and a preference for treatment in primary care, older adults with serious mental illnesses often do not come to the attention of the mental health treatment system. Many older adults may not even know what mental health services are available. This means the mental health system must go to them.

Many successful programs that serve older adults feature outreach as a key service. Comprehensive outreach programs include case finding, assessment, referral, consultation, and education and training to community providers (U.S. Administration on Aging, 2001). Outreach services may include evaluation and treatment services, facilitated access to preventive healthcare services, referral to community treatment or supportive services, and the provision of services that are designed to improve community tenure. Frequently, outreach is carried out in places where older adults feel comfortable, such as senior centers, congregate meal programs, and other community settings. In addition to community-based outreach, other models have examined mental health services provided in nursing home settings (Bartels, Moak, et al., 2002) and video-based outreach to rural areas (Jones & Ruskin, 2001).

Research supports the success of outreach efforts (Van Citters & Bartels, 2004b). Outreach models often emphasize the provision of services aimed at improving psychiatric symptoms and community tenure. Outreach models developed for older adults with mental illness often involve a multidisciplinary team of providers that implement a care management protocol within a residential setting. Some outreach teams focus on assessment and referral, whereas others directly implement the treatment recommendations of clinicians on the team. Older adults receiving outreach services have been shown to have decreased mental health symptoms and decreased incidence and length of psychiatric hospitalization (Van Citters & Bartels, 2004b; Russell, 1997). Furthermore, residents in one outreach program were more likely to receive clinical case management than individuals referred by other sources (Florio et al., 1998). In addition, outreach programs have enhanced the abilities of social workers to identify previously undetected cases of depression (Dorfman et al., 1995) and have been perceived as helpful to caregivers and individuals who make referrals to these programs (Seidel et al., 1992).

The Gatekeeper Program

One such initiative is the Gatekeeper Program, begun in 1978 by Elder Services in Spokane, WA. Gatekeepers is based on a simple idea—that those in need are unlikely to call for help. Many mental health problems emerge or may worsen in later life, a period when one-third of older adults in the community live alone. Gatekeeper programs respond with a simple practice: they use community members who deal with older adults as frontline assessors.

Utility, cable, telephone, bank, housing, and postal workers—as well as emergency medical technicians, firefighters, police, sheriffs, and others—are trained to identify older adults who may need mental health services and report these to a central information and referral office. For example, a utility worker called Gatekeepers about a 79-year-old woman, previously a faithful bill payer, who was now behind and sounded confused when contacted. In another instance, a bank manager called about a 74-year-old widower who accused the bank of stealing the money he had withdrawn just 2 days before.

After referral, a clinical case manager and nurse visit the home. They may need to do so several times to overcome a person’s suspicion and gain admission. To help keep the person at home, if at all possible, an interdisciplinary team—which usually includes a psychiatrist and a physician—develops a plan of care and meets with the person’s family. A study of 1-year outcomes for older adults referred to the Gatekeeper Program reveals that clients had greater service needs at referral than clients referred for case management by other sources, but these differences disappeared after 1 year of service. In addition, Gatekeeper clients were no more likely to be placed out-of-home than those referred by other sources (U.S. Administration on Aging, 2001). This program has been successfully replicated throughout the United States.

Helping Elders through Referral and Outreach Services (HEROS)

Programs based on the Gatekeepers model work well in rural areas where people can easily be overlooked. HEROS, or Helping Elders through Referral and Outreach Services, was begun in 1996 by a mental health and aging coalition in Pierce County, WA. HEROS staff screen phone referrals and pass them to a Geriatric Evaluation Outreach Services specialist, who makes a phone contact and home visit, if possible, to complete a comprehensive assessment and connect the person to appropriate services. Sometimes the appropriate services are no services at all. In one recent incident, a HEROS worker was able to determine that an elderly woman who complained repeatedly about things missing from her apartment was indeed having repeated break-ins. Eventually, the apartment manager’s son was arrested. Without this intervention, the elderly woman might have been assumed to be paranoid and placed in inappropriate services or medicated, notes Julie E. Jensen, a researcher at the Washington Institute for Mental Illness Research and Training. Using a Federal Center for Mental Health Services Community Action Grant from 1997 to 1999, the model was replicated in 10 other counties throughout Washington State. Ms. Jensen stresses the need for mental health, aging, adult protective, police, and other agencies to form coalitions to provide and coordinate services.

Screening and Assessment

Effective treatment begins with accurate screening and assessment. As previously discussed, accurate assessment of mental health and substance abuse problems in older adults is especially problematic. Collaboration among mental health providers, primary care providers, and elder services programs will help increase screening of older adults at any service door.

The accuracy of screening and assessment may be improved when clinicians are trained and supported in the use of a standardized geropsychiatric assessment and treatment planning toolkit, The Outcomes-Based Treatment Planning Toolkit for Geriatric Mental Health Services (Bartels et al., 2002; Bartels et al., in press). Developed with support from the New Hampshire Health Care Fund, Community Grant Program, and the Robert Wood Johnson Foundation, the toolkit is now a standard part of care in the public mental health system in New Hampshire and is being piloted by other States. As highlighted in the first section of this report, the preadmission screening and resident review (PASRR) requirements of the 1987 Nursing Home Reform Act require States to assess individuals with serious mental illnesses to determine whether nursing home placement is appropriate. Conducted accurately, these assessments can divert individuals to community-based services and can also help reduce the length of nursing home stays for people with mental illnesses who require such care by identifying their needs and ensuring that these needs are met. A key to this is having an effective follow-up process. In Indiana, for example, State nursing home licensure surveyors and Medicaid level-of-care reviewers are used for this purpose. A 1998 review of nursing home patient records, as part of a larger study funded by the Office of Medicaid Policy and Planning, found that 87 percent of the residents identified by the PASRR process as having a mental illness and requiring mental health services, were receiving some or all of the recommended services. Indiana also uses a similar preadmission screening process for individuals with mental illnesses applying for admission to the State-funded Residential Care and Assistance Program. Applicants with a mental illness are referred to the local community mental health center for an assessment to determine if the facility is an appropriate placement. If the individual is approved for admission, the facility must, within 30 days, develop a plan of care for the individual that is reviewed and approved by the local community mental health center. The State residential licensure agency holds the facility accountable for carrying out the plan.

Mental Health Treatment

The good news is that people with serious mental illnesses and substance abuse disorders can and do recover, and this includes older adults as well. Many older Americans have lived with mental disorders for much of their adult lives and have become active participants in their own recovery. Those who develop late-life mental disorders can be treated effectively with both pharmacological and psychosocial approaches (Bartels, Dums, et al., 2002).

For example, the Surgeon General’s report on mental health (U.S. Department of Health and Human Services, 1999) notes that treatment for depression is successful in 60 percent to 80 percent of older adults, though the treatment may take longer than it would for a younger person. Experts in the care of older adults with depression recommend combining antidepressant medication with psychotherapy, including cognitive behavioral therapy, supportive psychotherapy, problem-solving therapy, and interpersonal psychotherapy (Reynolds et al., 2002). Treatment of depression in older adults is critical because of depression’s link to suicide.

Treatment for older adults with psychotic disorders, as with younger individuals, includes the use of antipsychotic medication. However, because of age-related changes in how individuals metabolize medication, physicians may need to “start low and go slow” in the use of psychoactive medication, or may need to consider tapering dosages to ameliorate side effects that affect functional performance (U.S. Department of Health and Human Services, 1999; Cohen, 2000). One of the best predictors of level of functioning in older adults with schizophrenia is level of social support (Cohen, 2000).

As with other vulnerable individuals who have serious mental illnesses, including people who are homeless and those who have co-occurring substance abuse disorders, older adults may benefit from community-based, multidisciplinary treatment in the style of Assertive Community Treatment (ACT) teams. A review of the research finds significant support for this approach with older adults (Draper, 2000).

The Neighborhood Service Organization, Older Adult Services Unit, in Detroit operates a geriatric ACT program. Teams including a psychiatrist, nurse, and advocates are assigned a small number of clients, who must consent to the approach. Staff provide all services in the individual’s community setting; assistance ranges from making sure that a person’s dishes are done to seeing that he or she has taken medication. Over the past 9 years, 95 percent of clients have avoided rehospitalization, according to Paul Sabatini, Vice President for Behavioral Healthcare at Neighborhood Service Organization.

Integrated Service Delivery

Older adults with serious mental illnesses interact with multiple providers in a wide range of settings. Current fragmented service systems leave coordination of care up to the individual, who is ill-equipped to handle this task. New models of service delivery for older adults emphasize integration between and among the various systems that provide care, including the mental health system, the aging services network, and the primary health care system. Recent research supports the benefits of incorporating behavioral health care into medical settings (Katon et al., 1995; Katzelnick et al., 2000). This can be accomplished by using mental health teams, having a mental health specialist be a consultant to the primary care provider, or integrating mental health professionals into the primary care setting (U.S. Department of Health and Human Services, 1999). The integration of mental health providers into the aging services network may also be effective. Researchers found that affiliation of a Community Mental Health Center with an Area Agency on Aging led to a broader range of services for older adults (U.S. Administration on Aging, 2001). Problems encountered included their separate funding streams and the different geographic areas they serve.

Mental health services can help reduce medical costs. A recent meta-analysis of the impact of behavioral medicine, psychotherapy, and psychiatric consultation on medical costs found consistent evidence for a reduction in medical costs associated with these services, with the greatest savings for patients over age 65 (Chiles et al., 1999). Several multicenter, randomized trials are underway to test the effectiveness of different models of care for older primary care patients (Unützer et al., 2001; Bartels, Coakley, et al., 2002; Schulberg et al., 2001). They include the following:

● The Primary Care Research in Substance Abuse and Mental Health for the Elderly (PRISMe) study is a collaborative effort among the Federal Substance Abuse and Mental Health Services Administration, the Veterans Affairs Administration, and the Bureau of Primary Health Care. The study seeks to identify the best tools for screening and assessing older adults with mental and/or substance abuse problems within primary care settings, and to evaluate the relative effectiveness of providing mental health services in primary care settings versus referring patients to outside mental health professionals (U.S. Administration on Aging, 2001). Investigators are collecting data on the most prevalent mental and substance abuse problems experienced by older adults, measured at baseline, 3-month, and 6-month follow-ups.

● Project IMPACT (Improving Treatment of Late-Life Depression in Primary Care) is a multiyear study funded by the John A. Hartford Foundation in New York City and the California HealthCare Foundation in Oakland, CA. The project is testing the effectiveness of a new disease management model for late-life depression that involves the use of a clinical specialist who works closely with the patient’s regular primary care physician to manage the patient’s depression care. Preliminary findings reveal that the intervention, compared with usual care, leads to reduced prevalence and severity of symptoms or complete remission (New Freedom Commission on Mental Health, 2003).

● The Prevention of Suicide in Primary Care Elderly Collaborative Trial (PROSPECT) is funded by the National Institute of Mental Health and is being conducted at three of the Institute’s Intervention Research Centers (U.S. Administration on Aging, 2001). The study is designed to increase recognition of suicidal ideation and depression in older adults. Nurses and social workers trained as health specialists will work with primary care physicians to increase their recognition and identification of depression, offer treatment recommendations, and encourage compliance with treatment. Individuals who receive this intervention will be compared to those who receive “care as usual.”

Program of All-Intensive Care for the Elderly (PACE)

A relatively new, and very promising, Federal initiative is the Program of All-Intensive Care for the Elderly, or PACE, which was established in the Balanced Budget Act of 1997. These programs allow the pooling of Federal Medicare and Medicaid dollars into an inclusive package of services for people who are age 55 or over and meet nursing home admission criteria. The program serves as the sole source of services for Medicare- and Medicaid-eligible consumers enrolled in the program. Though not geared specifically to adults with mental illnesses, these programs serve many individuals who have psychiatric disorders (Colenda et al., 2002).

In order to participate in the program, the State Medicaid agency must add PACE to the State Medicaid Plan as an optional benefit, although Medicaid eligibility is not a requirement to enroll in the program. The State must also designate a PACE State-administering agency. This may be the State Medicaid agency or another public or private agency. The State must also determine how many Medicaid enrollees it will support in PACE and the organizations with which it will contract.

PACE services are based on consumer need rather than a list of covered services. As such, they can be more comprehensive and flexible than services covered by Medicare or Medicaid separately. PACE services must include all Medicare benefits and all services in the Medicaid State Plan, but can include additional medical and social services. Services are planned and monitored by an interdisciplinary team and are provided out of a central entity, usually some type of adult day health center, but in-home, institutional, and referral services also may be provided. PACE organizations are responsible for providing any mental health services that an enrollee requires.

Successful PACE demonstration projects may evolve into permanent programs. Currently, 24 demonstration projects and 2 permanent programs are in operation. Sixteen States have at least one project, with California, Massachusetts, and New York having the most. At present, no mental health agency has a PACE demonstration or permanent project.

Wraparound Services

Rather than making an individual fit into a range of different service programs, some providers and communities wrap the necessary services around the individual. The wraparound model, effectively developed for child populations (Burns et al., 1999; U.S. Department of Health and Human Services, 1999; Goldman & Faw, 1999), is particularly well suited to an older adult population.

Several models use the concept with older adults. For example, the Simcoe County Wraparound Initiative in Canada is one example of a locale that successfully provides wraparound services to people of all ages with mental illnesses (Simcoe County Mental Health Education, 1999).

Some older adult wraparound programs emphasize the integration of primary and secondary medical and social services, prevention, rehabilitation, medication, technical aids, and long-term care (Bergman et al., 1997). Others use a gatekeeper model, such as that described above, to identify older adults who may be at risk (Raschko, 1985).

The Southwest Ontario Regional Geriatric Program’s Model Project in two communities provides support for wraparound services. This model coordinates community agencies—including home care, public health, and nonprofit and private nursing services—as well as acute-care hospitals and private and nonprofit long-term care facilities, to serve older, frail adults. This model has been shown to be effective in training providers to assess older adults and address their needs in a coordinated fashion (Harris et al., 1999).

A Community Mental Health Center located in New Hampshire operates an Elders Wrap Around Team, which includes 12 regular member agencies, with an additional 40 agencies participating as individuals’ needs warrant. The program has reduced client hospital admissions (from 24 to 6 within just one quarter), and reduced length of hospital stays for clients served (from 18 to 12 days), as well as significantly increased referrals to other community services (Duford, 1999).

Home Care

Increasingly, the goal of most service provision to older adults has been to maintain them in their own homes, where they prefer to be. Home healthcare services grew rapidly in the past 20 years, but the Balanced Budget Act of 1997 curbed this growth by greatly restricting Medicare reimbursement to home healthcare agencies (Bruce, 2002).

Typically, home healthcare agencies provide such services as skilled nursing care, physical therapy, occupational therapy, housekeeping assistance, and social work services. An increasing number provide psychiatric homecare services, which are appropriate for those older adults with psychiatric disabilities who live in the community but have functional impairments that limit their ability to live independently (Bruce, 2002).

Home healthcare by skilled nurses may increase the likelihood that older adults with mental disorders receive care for comorbid medical illnesses. Nurses in the home may also make a more complete psychosocial assessment of their patients based on greater knowledge of the resources available to them and the environment in which they are living.

In much the same way, in-home crisis intervention allows professionals to determine possible domestic causes for a crisis and to assess individuals before their distress is exacerbated by being sent to a hospital for evaluation.

The Geriatric Regional Assessment Team of Evergreen Healthcare in Seattle uses an interdisciplinary team approach to in-home crisis intervention and stabilization. The team provides comprehensive assessments, including mental health status, medication compliance, substance abuse, health status, social issues, and functional domains. Based on the assessment, the team refers individuals to appropriate agencies for services, and follows up to ensure that a service plan is in place and that individuals are stabilized (U.S. Department of Health and Human Services, 2002).

Unfortunately, psychiatric home care services are not reaching the people who need them. Only 2.2 percent of patients who received Medicare-reimbursed home healthcare in 1997 received mental health services (Bruce, 2002). Lack of funding for these services, lack of home healthcare staff trained in psychiatric assessment and care, and lack of referral of older adults with mental disorders to home healthcare services limit the availability of this potentially valuable service for many older Americans.

Housing/Residential Treatment

Some older adults with serious mental illnesses will not have the family or financial resources to be maintained in their own homes and may require some type of residential treatment or supported housing placement to prevent unnecessary institutionalization. Historically, mental health professionals developed housing programs with little consumer input and with few financial resources. One housing model, such as board and care homes, was often the only option for all consumers. However, research and practice have shown that a variety of residential programs must be available in communities to address the needs, abilities, and preferences of the individuals served (Bianco & Wells, 2001).

As with their younger counterparts, older adults with serious mental illnesses can be served within supported housing settings. Supported housing features flexible, individual supports, combined with affordable housing in community settings. This approach has been extremely successful in helping many people live outside of institutions, and it receives consistently high rates of consumer satisfaction. In spite of these positive outcomes, however, there are no national guidelines or funding streams for supported housing, and States have had to patch together funding to implement various elements of this approach (Denton & Bianco, 2001).

Broward County Elderly and Veterans Services Division

The Broward County Elderly and Veterans Services Division in Fort Lauderdale, FL, promotes community living and prevents unnecessary institutionalization with a series of programs that support individuals in housing. Clients are older adults with serious and persistent mental illnesses or substance abuse, or those with co-occurring disorders. These may be living in the community or about to be discharged from South Florida State Hospital. The program serves, on average, 750 older adults a year, and 92 percent are not admitted to psychiatric in-patient care. Specific services include the following:

● Supported Housing Case Management helps residents being discharged from the State hospital make the move to community living. A case manager, peer counselor, and nurse form a team to help the older adult succeed in his or her new life with various services such as peer support and personal nursing care. A team member visits at least weekly, and staff is on call at all times. Recipients of services live on their own, with relatives, or in family care or group adult homes.

● Community Case Management serves individuals and their families in their homes with individual case plans and other measures to promote integration.

● Intensive Case Management helps older adults who are at risk of or awaiting institutionalization. A team of a case manager and peer counselor meet frequently with the person to stabilize his or her situation and promote community living. At commitment hearings, the team often succeeds in having the person returned to community life.

● The Substance Abuse Program provides prevention, treatment, and aftercare to older adults. Individual counseling is provided at people’s homes and, along with group counseling, at community settings, such as a senior housing complex or a social service agency that serves meals.

The program’s philosophy is the reason for its success, notes Director Stephen Ferrante. “The principle is for people to be living in housing of their choice and having the support to do so,” Mr. Ferrante says. “Not one of the 42 people discharged from the State hospital that we helped has had to be re-institutionalized. We help people age in place and in a manner that deters institutionalization.”

Community Opposition to Housing

Community opposition is less of a concern with supported housing, which by its nature involves the use of regular, scattered-site housing in the community. For other types of residential alternatives, providers need to educate community stakeholders and involve them in the planning process. Sharing information on program components, who will be served, what can be expected, and whom to contact if there is a concern can greatly ease the transition of older adults with mental illnesses into a neighborhood. Programs must conform to community standards, and staff must be prepared to help residents become accepted community members.

To combat the NIMBY problem in Tennessee, the Department of Mental Health and Developmental Disabilities Office of Housing systematically and effectively worked upfront with communities, asking for input and providing information about planned group residences. They dispelled myths about disruptive behavior of residents and lower property values. The results have been well worth the efforts. After 2 years, the overwhelming majority of community members agreed that group home residents have been good neighbors, that they had experienced no problems, and that property values had not dropped (Tennessee Department of Mental Health and Developmental Disabilities, 2001).

Peer Support and Consumer-Provided Services

As noted in the prevention section, some older people find support groups and peer counseling more acceptable than other forms of treatment. Support groups allow participants to be both recipients and providers of assistance (Schneider & Kropf, 1992), and they enable supportive relationships to develop. They offer relief and problem-solving opportunities to participants who can normalize their problems (Lieberman, 1993). Peer support can ready participants who lack the judgment, desire, and capacity to call for help to access treatment services (Rogers et al., 1993). Research supports the effectiveness of peer support programs for older adults that are focused on addressing depression and other needs associated with loss. In a 1-year study of peer support groups for older adults with losses, Lieberman and Videka-Sherman (1986) reported that self-help groups improved mental health status, whereas those in the control groups showed deterioration in most mental health indicators. Yet, a lack of consistency among the various studies regarding intervention conditions makes it difficult to define the extent of effectiveness, or specific components that make these interventions successful (Lieberman, 1993; Stroebe & Hansson, 1993).

Geriatric Peer Advocacy

Geriatric Peer Advocacy serves older adults with mental illnesses in several neighborhoods in Brooklyn, NY. The city-funded program is operated by the Baltic Street Mental Health Board, a consumer-run mental health organization established to serve patients leaving South Beach Psychiatric Center. Of 90 employees in 16 programs, 83 are mental health consumers. Baltic Street Mental Health operates various jobs, housing, educational, and support programs.

Geriatric Peer Advocacy offers services to older adults with mental illnesses that include information and resources on entitlements, transportation, housing, legal help, and other needs; support and help in obtaining those services; peer support groups; and workshops on recovery and self-help. All services are free and offered based on consumer request. Founded in 1996, the program serves about 50 people a year.

Outreach is a significant part of the geriatric program; however, once older adults enter the program, another challenge is to motivate them. “There’s a sense that people don’t want to be empowered,” says Isaac Brown, Director of Advocacy and Housing at Baltic Street. “It is very difficult to give older adults a sense of power.”

In its outreach and other programs, Baltic Street staff work alongside professional mental health and other workers who serve their clients. Geriatric Peer Advocacy workers conduct presentations at adult and group homes, health fairs, senior centers, churches, and other community organizations. The program runs peer support groups at its offices and also at an outpatient psychiatric clinic.

Consumer Involvement and Empowerment

To help empower older adults with serious mental illnesses, consumer participation in program design and operation is vital. All services must be appropriate for age, culture, and gender. The well-known tenet of the mental health consumer self-help movement, “nothing about us without us,” applies equally to older adults with serious mental illnesses.

In recent years, self-help and advocacy organizations led by mental health consumers have become visible and effective. Likewise, organizations comprised of older persons, most notably AARP, are known and respected, and bring important issues to national attention. Until recently, older adults with serious mental illnesses have lacked such a national forum, but a new and exciting initiative is bringing together older adults who are mental health consumers to educate researchers, policymakers, and the general public about their strengths and their needs.

Older Adult Consumer Mental Health Alliance

The recently formed Older Adult Consumer Mental Health Alliance (OACMHA) is an organization of older mental health consumers who exemplify self-advocacy among older adults with mental health needs. Funded through grants from the Federal Center for Mental Health Services and the Judge David A. Bazelon Center for Mental Health Law, the organization’s belief in the power of “our own voice” has been demonstrated at several national conferences held since the initial planning meeting in 1998.

In 2002, OACMHA established a Washington, DC, office and hired its first executive director. The mission statement of the Alliance is “to improve the quality of life of older persons affected by mental illness, and their family caregivers, by promoting through advocacy and public education, the development of accessible, affordable, and age-appropriate mental health services.”

Alliance President John Piciatelli of Washington State and Vice President Hikmah Gardiner of Pennsylvania provide evidence of what older advocates can accomplish as they speak out about the barriers to community mental services and what can be done to address them. Alliance members and their supporters were instrumental in having the needs of older adults addressed by the President’s New Freedom Commission on Mental Health, which was charged with developing an action plan for investing and coordinating Federal, State, and local resources to serve people with mental disorders.

“Don’t count me out,” is the message that Alliance members will take around the country, Ms. Gardiner says. She says the group is concerned about such issues as the inappropriate placement of older adults with psychiatric disorders in nursing homes; lack of training for staff in nursing homes and in community settings, especially for primary care providers who prescribe psychotropic drugs; and the stigma that attaches both to older adults and to those with mental illnesses. OACMHA will spread its message of hope and recovery through support for legislation, education, fundraising, and a national membership drive, Ms. Gardiner notes.

Cultural Competence

The Surgeon General’s Report on Mental Health: Culture, Race, and Ethnicity (U.S. Department of Health and Human Services, 2001) said it succinctly, “Culture counts.” The report notes that members of minority groups have less access to mental health services than whites, and the treatment they do receive is often of poorer quality. As the number of older adult members of minority groups increases, so, too, does the need to provide culturally adapted and age-appropriate services that are meaningful to them.

Stigma, language barriers, and lack of ethnically diverse and age-appropriate staff are barriers to appropriate care for older adults with serious mental illnesses. Mental health services for these individuals should be delivered by staff educated or trained in age-appropriate assessment and interventions, as well as lifespan developmental and cultural issues. Age-appropriate and culturally sensitive protocols and outcome measures should be required of every provider, perhaps as a contract requirement. Such practices have been shown to increase access rates for older adults (U.S. Department of Health and Human Services, 2001).

The Kit Clark Senior Services program in Boston provides a full array of services to older adults with mental illnesses who are multiethnic and multilingual. Services include assessment, treatment planning, case management, home care, referral services, home-delivered meals, transportation, housing, home repair, health education, and services for people who are homeless. The program helps instill self-respect and dignity in the individuals it serves by addressing needs in a culturally sensitive manner and treating the whole person.

A hallmark of Kit Clark’s success is community collaboration. The agency has built a supportive network of agencies that cross-refer, including theArea Agency on Aging, home care programs, hospitals, area churches, and others (U.S. Department of Health and Human Services, 2002).

System-Level Strategies

Complex cross-system problems call for new ways of doing business. Clearly, no one service system is equipped to address all of the needs of older adults with mental illnesses. Effective services require coordination and collaboration between and among providers of aging, health, substance abuse, and other services, in addition to mental health services. However, coordination and collaboration are often difficult because of “turf” issues, funding inflexibility and shortages, and rules and regulations that conflict. Coalitions at the national, State, and local levels have evolved to address the need for systems integration.

Community coalitions can be instrumental in bringing disparate resources together to provide coordinated services. Effective coalitions bring together providers and consumers in the areas of mental health, substance abuse, primary care, and aging to identify available resources and gaps. Through reaching out to one another, coalition members build trust across agency and community lines, resulting in cooperative efforts to enhance service availability and accessibility.

Successful collaboration includes communication and cross-training among agency heads and frontline workers. Memoranda of understanding, contracts, or other working agreements can be created that identify agency roles in providing services to individuals, and management information systems can be designed to allow providers to share certain records and information while protecting client privacy. Recognizing the need to reduce the numbers of older adults with dementia or mental illnesses in State hospitals and improve community-based services for these individuals, the Alabama Department of Mental Health and Mental Retardation carried out a three-phase plan to (1) create a Bureau of Geriatric Psychiatry within the Department; (2) develop a continuum of care within the community to provide housing, services, and support for older adults with dementia or mental illnesses; and (3) open a tertiary care hospital to facilitate outplacement of long-term older State hospital patients and reduce the stays of those newly admitted (Powers, 2002).

The Bureau of Geriatric Psychiatry coordinates with community mental health centers and Area Agencies on Aging statewide, providing training and consultation to them, and to nursing homes, assisted living facilities, and protective services caseworkers. The Bureau spearheaded a coalition for geriatric mental health in Alabama.

Recently, the Department of Mental Health and Mental Retardation collaborated with the Alabama Department of Senior Services to create and expand community care waiver slots for persons with dementia or serious mental illness. The specialized hospital assesses individuals, documents deficits and needs, and works closely with family caregivers and with supportive housing providers in the community. The result has been dramatically reduced lengths of stay, recidivism, and institutionalization of older adults.

The National Coalition on Mental Health and Aging

The National Coalition on Mental Health and Aging was founded in 1991 and serves as a forum for more than 60 Federal agencies and national organizations to gather to discuss mental health and aging issues. The Coalition provides opportunities for advocates, professionals, and government policymakers to develop collaborative working relationships and to educate one another in a nonadversarial setting. Each member agency has resources that may be relevant to the housing and service needs of older adults with serious mental illnesses.

One of the most important activities of the National Coalition on Mental Health and Aging has been to work toward agreement on a national agenda of goals to improve the welfare of older people with mental health needs. A 1999 national conference and follow-up work led to creation of the set of recommendations that follows:

● The Medicare law needs to be amended to provide parity coverage for mental health care and to include coverage of prescription drugs. (While recent legislation addresses prescription drug coverage, the lack of parity remains.)

● A consistent national policy for Medicare coverage of mental health services needs to be established.

● The Medicaid Institutions for Mental Diseases exclusion should be eliminated to encourage the development of community-based services by removing the barriers restricting the development of Home and Community-Based Waivers.

● The institutional bias in Medicare and Medicaid versus community-based alternatives must be eliminated.

● Federal agencies under the Department of Health and Human Services should increase staff expertise on aging, mental health, and substance abuse.

● The effort to build coalitions at the State and local levels involving aging, mental health, substance abuse, and primary health care should be continued, expanded, and supported.

● The older adult mental health consumer self-advocacy movement should be nurtured and supported.

● Research should address new treatments and provide scientific information to battle the still pervasive stigma regarding mental illness in older adults.

Further information on the National Coalition on Mental Health and Aging is available at www.ncmha.org.

State Mental Health and Aging Coalitions

At about the same time that the National Coalition was being initiated, the first statewide mental health and aging coalition began in Oklahoma. The success of the national and Oklahoma coalitions encouraged the development of coalitions in other parts of the country.

Since the mid-1990s, the Federal Substance Abuse and Mental Health Services Administration (SAMHSA) has supported the development of State coalitions with grants to AARP and to the National Association of State Mental Health Program Directors. These grants have supported initiatives to identify, design, and train networks of older adults, mental health services providers, and advocates to build mental health and aging coalitions at the State and local level (U.S. Administration on Aging, 2001). The goal of these coalitions is to increase public awareness of mental health and aging issues and to improve mental health service provision to older adults.

SAMHSA funded a similar project with a grant to AARP to support the development of both State and local coalitions that include the primary care and substance abuse treatment systems in the coalition process. To date, approximately 35 State and 10 local coalitions on mental health and aging have been formed (U.S. Administration on Aging, 2001). SAMHSA also funded a project through the AARP Foundation to evaluate earlier coalition-building efforts and identify and disseminate successful practices. Efforts are currently underway to establish stronger linkages between the National Coalition on Mental Health and Aging and the State and local coalitions.

Federal Initiatives

As part of the New Freedom Initiative, SAMHSA’s National and Statewide Coalitions to Promote Community-Based Care under Olmstead project, administered by the Center for Mental Health Services, has supported statewide groups focused on overcoming barriers to community integration for children, adults, and older adults with serious mental illnesses. The coalitions include policymakers, funders, providers, advocates, consumers, and family members.

One of the major accomplishments of the State Olmstead coalitions has been their work to define the range of community services, including nontraditional services (e.g., transportation, supported employment) that are required for individuals with mental illnesses to get out and stay out of institutions, and to ensure that the needs of individuals with mental illnesses are a priority in statewide Olmstead planning. In many States, this work has resulted in the recognition that the need for such services as housing, transportation, and employment support cuts across types of disability, age, and culture in determining an individual’s ability to participate in community life.

In 2001, SAMHSA began development of a strategic plan on aging. This comprehensive, 5-year plan will serve as a road map for future initiatives and foster cooperation and collaboration among the aging, health, mental health, and substance abuse service systems. In 2002, CMHS established the Positive Aging Resource Center. In 2004, nine targeted capacity expansion grant sites were implementing evidence-based programs for older adults.

Also, as noted previously, in large part due to the involvement of vocal advocates, the President’s New Freedom Commission on Mental Health cited the lack of services for older adults with serious mental illnesses as a significant service system gap. The Commission recommended that Federal agencies identify and consider payment for core components of “evidence-based collaborative care” delivered in primary care settings, including case management, disease management, supervision of case managers, and consultations to primary care providers by qualified mental health specialists that do not involve face-to-face contact with clients. (New Freedom Commission on Mental Health, 2003, p. 66)