The starting point for conducting a comprehensive evaluation of state mental health services is to define what a good public mental health system looks like. This section of the report outlines the standards NAMI used to conduct this evaluation.
In setting forth these standards, we acknowledge that no State Mental Health Authority (SMHA) has unilateral control over all elements of mental health services in its state. In a number of states, responsibility for administering community mental health services is vested at county levels, with the state responsible for such functions as running hospitals, setting standards for community services, setting rates, and monitoring provider performance.
Moreover, multiple state agencies, not just the SMHA, affect in some way the provision of mental health services. These agencies include corrections, housing, vocational rehabilitation, Medicaid, and others.
Despite these factors, our assumption in conducting this evaluation is that the SMHA plays the most critical role in organizing and implementing the statewide system of services and coordinating the various funding streams that help support these services. As the state agency directly responsible for mental health services, the SMHA therefore ultimately must be held accountable for how these services are organized and delivered.
Based on NAMI's review, we have determined that high quality state mental health systems are characterized by the following 10 elements.
1. Comprehensive services and support
2. Integrated systems
3. Sufficient funding
4. Consumer- and family-driven systems
5. Safe and respectful treatment environments
6. Accessible information for consumers and family members
7. Access to acute care and long-term care treatment
8. Cultural competence
9. Health promotion and mortality reduction
10. Adequate mental health workforce
Today, it is widely understood that a diagnosis of a serious mental illness need not relegate a person to a lifetime of suffering or dependency. With appropriate services and supports, people with serious mental illnesses can and do recover and lead lives that are productive and meaningful. Moreover, the term "recovery" does not mean simply relieving or controlling medical symptoms. It focuses more broadly on the process of restoring "self-esteem and identify and on attaining meaningful roles in society." Recovery also does not necessarily refer to "curing" mental illness, but rather describes a process of restoring consumers' independence, self-sufficiency, dignity, and personal fulfillment.
Serious mental illnesses affect people in a wide variety of ways. Therefore, the specific services needed and the intensity of those services will vary from person to person. However, a high quality mental health system should, at a minimum, include the following services.
A. Affordable and supportive housing.
Housing is the cornerstone of recovery for people with serious mental illnesses. Without stable housing, it is very difficult for consumers to benefit from other services. Supportive housing is an approach that combines affordable housing with supportive services to help people with serious mental illnesses achieve stable and productive lives. Supportive housing has proven effective in alleviating homelessness and aiding recovery.
Unfortunately, supportive housing options are in short supply in most parts of the country due to federal cuts in vital programs such as Section 8 and Section 811, and the prohibitive costs of housing. Nationally, the average monthly cost of a one-bedroom rental apartment exceeds the total amount of monthly income under Supplemental Security Income (SSI). Thus, even though SMHAs may not be directly responsible for funding housing programs, NAMI believes that it is very important for these agencies to be integrally involved in strategies to develop supportive housing opportunities for consumers at both state and local levels.
B. Access to medications.
Significant progress has been made in the past several decades in discovering medications that alleviate and help to control the most profound symptoms of serious mental illnesses such as schizophrenia, bipolar disorder, and major depression. Medication decisions are best made on an individualized basis, taking into consideration factors such as consumers' past treatment history, side effect profiles, and other clinical concerns. A high quality mental health system should include full access to approved psychiatric medications and should enable clinicians, in partnership with consumers, to make informed medication decisions tailored to the individual. The system also should include mechanisms for providing physicians with feedback about prescribing patterns and ongoing education about best practices.
C. Assertive Community Treatment (ACT).
ACT is the most studied and widely adopted model for addressing the needs of people with serious mental illnesses who require multiple services at a high intensity and level of support. ACT programs are characterized by inclusion of all key service components (mental health, substance abuse, etc.) under one administrative entity; low staff-to-client ratios; services that are available on a 24-hour, seven-day-a-week basis; a client-centered program philosophy that encourages the provision of services at whatever location that client prefers; and a mobile crisis management capability. While relatively expensive, ACT programs have a track record of success in reducing far costlier hospitalizations and other adverse consequences of lack of treatment.
D. Integrated Dual Diagnosis Treatment (IDDT).
IDDT is an evidence-based program designed for people with co-occurring mental illnesses and substance abuse disorders. It is characterized by both mental health and substance abuse treatment provided at the same time and in one setting. Research results demonstrate that integrated approaches to mental health and substance abuse treatment are more effective and produce better outcomes than non-integrated approaches.
E. Illness Management and Recovery.
Illness management programs are intended to educate consumers about their mental illness so they may make informed decisions and generally manage the course of their illness effectively. These programs generally are conducted by professionals and are distinguished from illness-self-management programs which are conducted by peers. While these programs provide strategies for minimizing symptoms and preventing relapse, many go further and try to help recipients achieve personal goals and recovery. Research conducted on these programs provides promising indications that they are successful in increasing consumer knowledge and fostering recovery.
F. Family psychoeducation.
Family psychoeducation programs are designed to educate and inform family members about the mental illness of a loved one and to participate in a meaningful and informed way, in partnership with consumers and providers, in helping to prevent relapse and to foster recovery. Studies show a reduction in relapse and re-hospitalization rates among consumers whose families have participated in family psychoeducation programs.
G. Supported Employment.
Supported employment is an evidence-based approach to helping consumers find and maintain competitive employment. Unlike the traditional approach to vocational rehabilitation, which involved job training and subsequent job placement, supported employment follows a "place and train" model. People with mental illnesses are helped to find a suitable job and are provided with job coaching and related services designed to help them keep it. Research on supported employment demonstrates its effectiveness in improving employment outcomes for consumers.
H. Jail Diversion.
Jails and prisons have become de facto psychiatric treatment facilities. It is conservatively estimated that 16 percent of all inmates - more than 300,000 people - in U.S. jails and prisons suffer from serious mental illnesses. Jail diversion programs are collaborations between criminal justice and mental health systems designed to link individuals (primarily non-violent offenders diagnosed with serious mental illnesses or co-occurring mental illness and substance abuse disorders) with appropriate services instead of incarceration. Jail diversion strategies include pre-booking diversion initiated prior to arrest, and post-booking diversion, which is initiated following arrest and is often under the ongoing supervision of courts.
I. Peer Services and Supports.
The provision of services by peers is a growing trend in the mental health field. These services include case management, drop-in centers and clubhouses, outreach programs and consumer-run businesses. The benefits of these services are two-fold: first, they provide meaningful work for consumers employed as peer specialists and peer counselors, and second, there is emerging evidence that peer services produce positive outcomes. In recognition of this, peer specialists are now included as part of recommended staffing for ACT teams.
J. Crisis Intervention Services.
A quality mental health system must have mechanisms in place to respond in a timely and compassionate manner to people with serious mental illnesses in crisis. Too often, these responsibilities are left to law enforcement. Mobile crisis intervention services should be available on a 24-hour, seven-day-a-week basis. Acute care hospital beds and/or crisis residential services must be available for individuals identified as needing that level of service.
The list set forth above represents NAMI's judgment about what constitutes the essential elements of high quality mental health services. It is by no means an exhaustive list. Other services that should be available include psychiatric rehabilitation, clubhouses or drop-in centers, and supported education.
To achieve recovery, people with serious mental illnesses require multiple services, ranging from psychiatric treatment to housing to rehabilitative services. Typically, these services are furnished by different providers accessing different sources of funding, and therefore operating under different rules. The result is a mental health system that, in the words of President Bush's New Freedom Commission on Mental Health, "looks more like a maze than a coordinated system of care."
Complex, uncoordinated mental health service systems serve no one's interest - not providers, not families, and certainly not consumers. One important element of quality in a mental health system is the extent to which the various services required by individual consumers - and the funds used to pay for these services - are provided in the most user-friendly manner possible. This requires close collaboration among the systems responsible for providing the various services.
One method being tried involves integrating diverse funding streams into one general fund. However, even without blended funding, it is possible to coordinate services to design effective service systems at local levels. Coordination must occur, for example, between SMHAs and regional or local mental health systems and providers to facilitate seamless transitions from inpatient to outpatient services. And, coordination also must occur among the myriad state agencies offering services for people with serious mental illnesses.
As the entity most knowledgeable about the services consumers need and how best to deliver them, SMHAs should be at the center of these integration efforts. Moreover, SMHAs should be aware of all services for consumers, even those for which they are not directly responsible. For example, SMHAs should be involved in the design of jail diversion or supportive housing initiatives, even though they may not be directly responsible for funding these services. Similarly, SMHAs should be aware of where these programs and services exist at local levels.
In recent years, many states faced with budget deficits have cut mental health services funding and/or increasingly relied on Medicaid to pay for community mental health services. Today, Medicaid is the largest single payer of public mental health services. Since Congress has recently enacted cuts to the federal portion of Medicaid, burdens on states are likely to increase even more.
Continuing disparities in mental health coverage in health insurance is also a factor. Although 36 states have enacted parity laws, the lack of a federal parity law is an impediment to achieving true equity in coverage of mental illnesses in private health insurance. And, costs not picked up by private insurance frequently are shifted to state mental health systems.
There is increasing awareness that short-term savings accrued through cuts in public mental health funding lead to increased long-term public costs associated with hospitalizations, incarcerations, and other costly consequences of lack of treatment. NAMI's research for this project reveals that a few states have increased mental health funding in recent years, even in the face of overall budget deficits.
Funding is not the only solution. Funds allocated for services that don't work or systems that don't effectively coordinate mental health services are wasteful and inefficient. However, the provision of high quality mental health services cannot be achieved without adequate funding. The sad reality today is that few states are funding public mental health services at levels sufficient to enable all or even most who need those services to receive them.
Historically, consumers have had little involvement in the services they receive or the settings in which they receive them. Some consumers continue to have negative experiences with the treatment system, which deters many from continuing to participate in services. Families, too, often have been discounted as having any role to play despite the fact that, in many cases, families function in a primary caregiving role.
In recent years, there has been some progress in creating systems that are responsive to the concerns of consumers and family members. For example, successful efforts in many states to reduce the use of restraints and limit consumers' seclusion in hospitals can be directly traced to the efforts of consumer advocates.
A system that is truly consumer- and family-driven is characterized by meaningful involvement of consumers and families in the design, implementation and evaluation of services. Consumers and family members should be regarded as true partners in this enterprise, not as mere advisors whose feedback can be ultimately discounted. Mental health systems should operate in a transparent manner, welcoming and supporting monitoring and feedback from consumers and family members. One promising development in a few states is the emergence of consumer and family teams responsible for monitoring the quality of psychiatric treatment facilities and other mental health services.
As discussed above, many consumers have had painful experiences with the treatment system. These experiences - such as being put into restraints or seclusion, suffering abuse and assault, or encountering a general disregard of one's concerns while in a treatment facility - reduce trust and willingness to participate in future treatment. Inpatient psychiatric treatment facilities and community treatment or residential programs are unsafe and even dangerous in some parts of the country.
As any consumer of healthcare services would expect, people with serious mental illnesses should be treated with dignity and respect while in inpatient or community treatment programs. Adequate staffing must be maintained and program staff should receive training on crisis de-escalation techniques in order to avoid the use of restraints or seclusion. Consumer complaints of abuse and neglect should be investigated promptly, the findings shared with the consumer, and steps taken to remedy any problems that are identified. All deaths or serious injuries that occur in psychiatric treatment programs must be reported and investigated.
Being diagnosed with mental illness is a traumatic and unsettling experience for consumers and their families. At such times, accurate information about the specific diagnosis, treatment options and community resources is vitally important. Unfortunately, this information is frequently unavailable.
NAMI believes that SMHAs play a critical role in disseminating information to the public about mental illnesses and where people diagnosed with these illnesses can go for help. As reliance on the Internet increases, this information should be available on the SMHA website. Moreover, SMHAs should develop written materials and resources and provide training to their employees about how to respond effectively to inquiries from the public.
As efforts to transform state mental health systems from institutional to community-based care continue, adequate resources must be maintained for the provision of acute or long-term psychiatric treatment for those who need it. These resources should include acute care beds, group homes or other 24-hour residential programs for people who require continuous care on a long-term basis. The use of nursing homes or unlicensed and unregulated board and care homes to address the needs of previously institutionalized individuals is not appropriate.
Communities throughout the country are becoming more diverse, with a rich mix of racial and ethnic groups. Mental health services should be designed and delivered in a culturally competent manner. A number of states have made significant strides in developing culturally competent services, some of which are highlighted in this report. Awareness of the need for cultural and language competence should be incorporated in all aspects of mental health planning and service delivery, including staff recruitment, staff training, development of resource materials, and service delivery.
Studies have shown that people with schizophrenia and other serious mental illnesses have a higher risk of medical disorders such as diabetes, hypertension, and heart disease than people without mental illnesses. There are a number of possible contributing factors, including high rates of smoking among people with mental illnesses, reduced physical activity and fitness levels, and the side effects of psychiatric medications. NAMI believes that a high quality mental health system must promote the overall health of those it serves through the integration of primary medical care with psychiatric treatment. Health-promoting activities such as exercise, smoking-cessation programs, and dietary education must be offered and data about medical risk factors and health mortality rates collected.
There is a significant shortage of qualified mental health personnel across the country. This shortage pervades all aspects of the field, from psychiatrists to caseworkers and other direct service personnel. NAMI believes that SMHAs should work in partnership with other relevant agencies and institutions (e.g., universities) on initiatives to ensure an adequate supply of qualified mental health personnel. These initiatives should consider strategies such as educational subsidies, loan forgiveness programs, continuing education, competitive salary and benefit structures, and inclusion of consumers and family members within the mental health workforce.