NAMI identifies as the priority population those persons of all ages who have severe and persistent mental illness. State governments must develop and maintain a comprehensive community support system of treatment and services for the priority population using evidence–based programs and practices. Continuity of care must be ensured. Expenditure of funds must be monitored to ensure that funds are spent on evidence-based services for the priority population. Programs must publicly report their performance in meeting core accountability expectations. In addition to meaningful participation on state mental health planning councils (the P.L. 99-660 councils), NAMI believes that services must include regular measurements of consumer and family satisfaction and dissatisfaction. These measurements are best conducted by independent consumer and family satisfaction teams.
Schizophrenia PORT Demonstrates the Scope of the Problem
Research findings by The Agency for Health Care Policy and Research (AHCPR), National Institutes of Mental Health (NIMH), University of Maryland, and Johns Hopkins University Schizophrenia Patients Outcomes Research Team (PORT) demonstrate why greater mental health system accountability for the application of appropriate treatment and services for people with severe mental illnesses must be promoted. Among those findings, published in their landmark 1998 PORT study, were:
Only 29.1 percent of persons with schizophrenia received appropriate dosages of medications.
Fewer than half of the individuals who also have depression received any antidepressant medication.
Only 53.9 percent of persons with side effects from their antipsychotic medications receive treatment to counteract these side effects.
Only 2 percent to 10 percent of individuals with schizophrenia participate in assertive community treatment (ACT) programs.
The Federal Mental Health Block Grant
First established in 1981, the Mental Health Block Grant (MHBG) was amended in 1986 to require states to develop comprehensive services plans for persons with serious mental illnesses. States must use the advice of State Mental Health Planning Councils, which must have a membership in which 51 percent are consumers, family members, and non-treating professional citizens, to develop these plans. Legislation enacted by Congress in 2000 (P.L. 106-310) converted the block grant into a "Community Mental Health Services Performance Partnership," that requires states to develop new performance targets. Over the past two years, the MHBG has received substantial funding increases from Congress, from $289 million in FY 1999 to $420 million in FY 2001.
Little Accountability Now
There is presently very little accountability for block grant expenditures. States have to confirm that dollars support community mental health services are consistent with the state’s mental health plan for persons with serious mental illnesses. Most states either will not publicly say or cannot publicly say how many people are served. Nor can they say precisely what services persons receive. A 1999 Willamette Week (Oregon) article, "Task Force Finds Multnomah County’s Mental Health System in Disarray," typifies the lack of accountability in public mental health systems throughout the nation. The article reports: "The questions are simple enough. With an eye to improving Multnomah County's mental-health services, a special task force is trying to find out how well the current system works--how many people it serves, how much it costs, who pays for it, and what the results are. The answers, according to an interim report, are Not sure, Couldn't say, Don't know, and We're checking on that."
"What the data workgroup finds is a mental health system without the basic mechanisms of system accountability," concludes a report issued Nov. 17 by a working group of the county's mental-health task force. "It cannot easily explain to the taxpayer how much money is being spent, for what, and with what results."
NAMI Advocacy Goals and Strategies
NAMI has three major goals for MHBG spending at the national and state levels:
To target and focus MHBG funds to the most severely and persistently mentally ill through replication of evidence-based programs such as programs for assertive community treatment (PACT).
To move state mental health systems toward an unduplicated count of persons served by diagnosis, age, gender, race, and services used.
To have both the mental health and substance abuse treatment systems, through requirements on their SAMHSA block grants, integrate services for persons with co-occurring mental and addictive disorders.
Needed: Evidence–based Services for Persons with Severe and Persistent Mental Illness
Each of these goals is based on the principle that public mental health spending should be guided by evidence-based service models that focus on children and adults with severe and persistent mental illnesses and that there must be specific accountability for fidelity to these models. Currently many states cannot precisely determine who is served, and how are they served mostly because the law allows block grant funding for any mental health service for anyone with a serious mental illness (including children with serious emotional disturbance). The federal Center for Mental Health Services at SAMHSA interprets this definition of the law as overly broad. NAMI seeks to target any block grant appropriations increase to evidence-based programs, such as programs for assertive community treatment (PACT), for persons with severe and persistent mental illnesses.
NAMI’s Accountability Template
NAMI’s board of directors has developed an accountability template, "What Consumers and Families Expect from Treatment Systems for Persons with Severe Mental Illness." The nine accountability domains of this template are: Nondiscrimination, Access to and Continuity of Care, Evidence-based Treatment and Services, Consumer and Family Involvement, Recovery-oriented, Right to Safety/Consumer Protection, Decriminalization, Adequate Investment and Cultural Competency. NAMI urges its state affiliates, through their state mental health planning councils, to use these accountability domains to implement new performance-partnership measures as part of the new Substance Abuse and Mental Health Services Administration (SAMHSA) authorization law (P.L. 106-310).
P.L. 106-310 Falls Short of NAMI’s Goals and Priorities
In 2000, Congress completed action on legislation reauthorizing all programs under SAMHSA’s jurisdiction, including the MHBG, now renamed the Mental Health Performance Partnership Grant. P.L. 106-310 makes several modest changes in the block grant program, most related to planning requirements. Within two years, SAMHSA will be required to submit to Congress proposed separate mental health and substance abuse performance-partnership plans that describe a common set of performance measures for accountability.
P.L. 106-310 encourages states to provide data to SAMHSA voluntarily. The submitted plans are to be developed by SAMHSA in conjunction with states and interested parties. For mental health plans, performance measures must be for the treatment of children with serious emotional disturbance, adults with serious mental illnesses, and "individuals with co-occurring mental health and substance abuse disorders." For substance abuse plans, performance measures must be for the treatment of pregnant addicts, prevention of HIV transmission and tuberculosis, and "those with co-occurring substance abuse and mental disorders." The plans must also include definitions of the data elements used; and they must identify obstacles to implementing such performance measures and data collection, resources needed for such implementation, and an implementation strategy including with any legislation that will be necessary.
The new law does authorize data infrastructure development grants to help states increase their capacity to report the data required for the performance measures. These funds are to be divided equally between mental health and substance abuse agencies. As a condition of receiving these grants, a state must actually have developed a core set of performance measures. The grants are to help states develop and operate data collection, analysis, and reporting systems.
NAMI was unsuccessful in convincing Congress, part of P.L. 106-310, to require an unduplicated count of persons served both through the block grant and in the public mental health system. NAMI believes that without this unduplicated count, there can be no guarantee that persons with severe and persistent mental illnesses will actually be served and no guarantee that they will receive the intensity of services they require.
More on the Need for an Unduplicated Count of Persons Served
It is estimated that only half of the states can offer unduplicated counts. The federal government, through its Center for Mental Health Services at SAMHSA, has counted for years "episodes of care." However, if episodes of care cannot be directly related to the number of persons served, what is the value of the measure? In 1990 the federal government reported that 8.6 million episodes of care were delivered to persons for mental health needs. That statistic is meaningless.
NAMI is advocating for an unduplicated count of persons served for the following reasons:
A major public-agenda item and a rallying call for NAMI over the years has been to redirect public services toward serving the population that is the most seriously ill. It is impossible to determine if a system truly serves the most seriously ill unless that system can provide an unduplicated count of persons served by diagnosis and services used.
NAMI advocates replication of evidence-based programs for persons with the most severe illnesses. An example of such a program is the Program of Assertive Community Treatment (PACT). How can a system identify persons in need of PACT's targeted services except by an unduplicated count of persons served by diagnosis and services consumed?
Managed care, using capitated payments (fixed budgets with allocations per number of people enrolled in a program), has frequently been disastrous because a database of persons previously served did not exist. This payment system has contributed to severe managed care problems in Montana and Tennessee. Because these states had no adequate database of previous services used by clients, the capitated payment was inadequate and the systems were consequently underfunded. People were denied services, in part because the capitated payment had no historically accurate basis. An unduplicated count of persons served according to the services used would have provided a realistic estimate of the money needed to adequately serve this population.
Under wide consideration is a performance-based system. Health plans, mental health systems, and providers must be publicly accountable for their outcomes. NAMI advocates a performance-based system, which cannot exist without an unduplicated count of persons served.
NAMI desires a publicly accountable system of performance-based services, which would allow consumers and families to compare health plans, service systems, and treatment providers using publicly available performance data. But comparing systems according to performance requires an unduplicated count of persons served.
It appears that for-profit and non-profit, provider-based and management-agent based, private and public organizations all claim that they can successfully manage clinical care and maintain the highest standards. How can these service providers move consumers from inappropriate services into appropriate services without an unduplicated count of persons served by service settings?
NAMI, therefore, advocates an unduplicated count of persons served, by age, diagnosis, gender, race and types of services consumed.