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Chapter 10The Uniform Reporting System Ted Lutterman
Olinda Gonzalez Introduction—The Uniform Reporting SystemThe Uniform Reporting System (URS) is a Federal reporting system used by State mental health agencies (SMHAs) to compile and report annual data from each State as part of the Substance Abuse and Mental Health Services Administration (SAMHSA)/Center for Mental Health Services (CMHS) Federal Community Mental Health Block Grant (CMHBG). The URS is part of an effort to use data in decision support and planning in public mental health systems, as well as to support program accountability. The URS effort began in 2001, and three rounds of State and national reporting have been completed. This reporting effort demonstrates that, as of 2004, the State public mental health systems are providing mental health services to 5.7 million persons each year. Persons served by the SMHA systems are more likely than those who receive private services to be unemployed and receiving Medicaid assistance, and many are children or young adults. Persons served by SMHAs are most often served in community mental health settings and generally rate their access, appropriateness, and outcomes of services as positive. State mental health agencies expended more than $26 billion to provide mental health services in FY 2003. The URS comprises a set of 21 tables developed by the Federal Government, in consultation with SMHAs, that compiles annual State-by-State and national aggregate information, including numbers and sociodemographic characteristics of persons served, the outcomes of care, use of selected evidence-based practices, client assessment of care, and insurance status. In addition, the URS tables compile information on the expenditures of SMHAs, local programs that receive CMHBG funds, uses of those funds, and general questions on the SMHA system status. SAMHSA is now using these tables to calculate the 10 recently announced mental health National Outcome Measures (NOMs) for State and national reporting. The URS also includes prevalence estimates of need for mental health services in the States. The CMHBG is the largest single Federal funding source dedicated to mental health services. Each year, over $440 million has been distributed to SMHAs in 50 States, the District of Columbia, and eight territories to organize and deliver mental health services to adults with serious mental illnesses (SMI) and children with serious emotional disturbances (SED). As part of their Block Grant activities, each State is required to develop a plan to develop comprehensive mental health services and to report to CMHS on its progress in implementing this plan. Every SMHA develops a unique plan that takes into account its organizational structure, the resources and needs of the State, and the priority populations and services. Each State reports on the priorities it has established and the consumers served, with data tailored to its Block Grant priorities. Until the development of the URS, SAMHSA/CMHS had been hampered by the lack of a common framework for reporting services States provided under the Block Grant, which made it difficult for SAMHSA/CMHS to summarize the activities across all the States. SAMHSA’s National Outcome MeasuresIn 2004, SAMHSA announced a set of National Outcome Measures (NOMs) for mental health and substance abuse (figure 10.1). The NOMs will be measured across all SAMHSA-funded programs and will focus on using information to improve services for persons with mental illnesses and addictive disorders. The NOMs were selected to provide data on program accountability, with recovery and resiliency as a focus for serving consumer populations. “Increasingly, policymakers and budget planners at all levels—Federal, State, local, and private—are basing funding decisions on outcome data,” said SAMHSA Administrator Charles G. Curie, M.A., A.C.S.W. “Eventually, this Web-based tool—SAMHSA’s National Outcome Measures (NOMs)—will provide the public and policymakers with the information to improve the management and performance of our programs and make the most of the limited dollars available to help people attain and sustain recovery” The mental health NOMs include measures that depict how well consumers are
managing their illnesses and living and working in the community; improved functioning
for persons receiving mental health services; obtaining and keeping a job or
enrolling and staying in school; decreased involvement with the criminal justice
system; securing a safe, decent, and stable place to live; and having social
connectedness to and support from others in the community, such as family, friends,
coworkers, and classmates. Two other measures directly address the treatment
process itself in terms of services available and services provided: increased
access to services for mental health, and decreased inpatient rehospitalizations
for mental health treatment. The final three measures examine the quality of
services provided: client perception of care, cost-effectiveness,
and use of evidence-based practices
in treatment. The URS/Data Infrastructure Grants process currently includes pilot testing measures for the two NOMs that were not an original part of the URS tables: improved functioning and social connectedness. The process also includes working to further refine the URS developmental tables that are used for additional NOMs: criminal justice contacts, school attendance, and use of evidence-based practices. The work of the URS to operationalize these measures is discussed in further detail later in this chapter. History of Data Developments at CMHSThe development of State and National public mental health data standards and performance indicators has been addressed directly in the public mental health field in the past 25 years, demonstrating significant progress. Early recognition of the need for use of data for decision support in planning spurred the establishment of the Mental Health Statistics Improvement Program (MHSIP) in 1979. MHSIP, a community of professionals and participants interested in use of data in the mental health field, initially focused on data standards and development and national policy issues related to data. An early product of MHSIP was the FN-10 document of mental health data standards for implementation by Public Mental Health Authorities (Leginski, Croze, Driggers, Dumpman, Geertsen, Kamis, et al., 1989). CMHS concurrently sponsored various State grant projects that supported development of data standards and data-driven decision support systems in State mental health systems. In l996, MHSIP developed the Mental Health Consumer-oriented Report Card, which identified the major domains of access, appropriateness, outcome, and prevention and included a set of 46 performance indicators recommended for use in mental health information systems. An essential component of the MHSIP Report Card was the development of the MHSIP Consumer-oriented Survey, which assessed consumer perceptions of care. In the 4 years following the publication of the MHSIP Consumer-oriented Report Card, CMHS funded 45 State Reform Grants to SMHAs to implement performance measures in State public mental health systems, using the MHSIP Report Card as a framework. Through these grants, 45 States implemented the MHSIP Consumer Perception of Care Survey and incorporated MHSIP Report Card indicators into their respective State systems. In 1997, the National Association of State Mental Health Program Directors (NASMHPD) developed a Framework of Performance Indicators for Public Mental Health Systems (see figure 10.2). The NASMHPD Framework incorporated much of the MHSIP Report Card—in particular the MHSIP Consumer Perception of Care Survey—and added performance indicators related to public mental health systems (including hospital readmissions, use of seclusion and restraints, and fiscal indicators). In 1997, CMHS further initiated a project with the data and Block Grant planning staff and the National Association of State Mental Health Program Directors Research Institute to pilot 32 performance indicators, contracting with five States for a year to assess State capability to record and report measures in a uniform manner. This work was the initial piloting that addressed uniformity of reporting in States. The 32 indicators were taken from the NASMHPD Framework and also built on the work of the States under the CMHS-funded State Reform Grants. While the CMHS State Reform Grants had focused on helping individual States to implement their own performance measurement systems, the Five-State Study (Ganju & Lutterman, 1998) focused on reporting a common set of 32 indicators. This pilot effort was followed by a CMHS 3-year grant program, the 16-State Indicator Pilot grant, in which 16 States further piloted 32 performance measures for testing comparability and reporting data in a uniform manner. The data reports that were produced from this work confirmed that States could produce reports for many of the performance measures, but that support to modify or update their information systems infrastructure was crucial to facilitate uniform reporting. This project also initiated the collaborative work among States that continues in the piloting and refining of measures for uniform reporting. The work of MHSIP supports data-driven decision support in publicly funded mental health programs. CMHS and MHSIP also support DS2000+, an integrated set of mental health data standards designed to help stakeholders make critical decisions in areas of population, enrollment, encounter, financial, organizational, and human resources data sets; performance indicators, report cards, and outcome measures; and fidelity measures for clinical and systems guidelines. These initiatives, implemented over a period of years, have provided the foundation for State mental health reporting of URS measures utilized for planning in States and reported to the CMHS CMHBG program. Figure 10.2 summarizes the efforts discussed in this section. Status of Current Mental Health Performance InitiativesReleased in 2005, the MHSIP Quality Report (MQR) is a set of proposed performance measures that lays the groundwork for the next generation of activities in mental health performance measurement (Ganju et al., 2005). These proposed measures represent a consensus of representatives of both private and public stakeholder organizations, including the American Managed Behavioral Health Association (AMBHA), American College of Mental Health Administrators (ACMHA), National Alliance for the Mentally Ill (NAMI), National Mental Health Association (NMHA), the Federation of Families, National Association of State Mental Health Program Directors (NASMHPD), National Council for Community Behavioral Healthcare (NCCBH), National Association of Consumer/Survivor Mental Health Administrators (NAC/SMHA), National Association of Mental Health Planning and Advisory Councils (NAMHPAC), State mental health planners, CMHS representatives, the Recovery Measurement Group, and the Outcome Roundtable for Children and Families. The purpose of the MQR is to develop a set of indicators that will serve as the new standard for performance measurement in the mental health field. The MQR is discussed in detail in chapter 9 in this publication. Building upon lessons learned from the development, testing, and implementation of mental health performance measures in both the public and private sectors, the MQR reflects the state of the art in the development of the next generation of mental health performance measures. The MQR consists of a universal set of performance indicators that apply across different populations and settings with additional population-specific and setting-specific indicators. It is especially designed to meet the needs and approaches of today’s administrator. It is—
At this stage, the indicators and measures in the MQR are proposed for selected testing and refinement. The Federal Mental Health Block Grant ProgramAs part of State CMHBG activities, each State is required to develop a plan for comprehensive mental health services, and to provide annual progress reports to CMHS on implementing the plan. Every State mental health plan takes into account its unique organizational structure, the State’s resources and needs, and the priority populations and services of the system. Each State reports on the priorities it has established and the consumers it serves, but States have tailored their data reporting to their Block Grant priorities. Although the CMHBG design allows States considerable flexibility to focus on services that are of high local priority, the decentralized focus of the CMHBG has historically resulted in States reporting implementation data to CMHS that are specific to each SMHA’s system, making the data difficult for CMHS to aggregate to develop a national picture of public services related to the CMHBG. From its very initiation in the early 1980s, the CMHBG did not have a common set of reporting guidelines for the services provided by States under the Block Grant. This lack of uniform reporting standards hampered CMHS’s ability to summarize and quantify the activities and performance across all the States. In the late 1990s, in response to the need for more accountability and data on public mental health services, the SAMHSA/CMHS Division of State and Community Systems Development (DSCSD) and State mental health agencies and their national organizations (NASMHPD and NRI) collaborated to ensure that uniform data describing the public mental health system and the outcomes of its programs are available. Section V of the Community Mental Health Services Block Grant Application Guidance and Instructions for FY 2002–2004 contained guidance regarding reporting uniform data in a series of tables on public mental health services. The development of these reporting guidelines was built on the experiences of SAMHSA/CMHS and SMHAs in conducting the previous 16-State Study and other performance indicator initiatives. Section V includes the Uniform Reporting System of 21 reporting tables developed for States to submit as part of their CMHBG Implementation Report due to SAMHSA/CMHS every December. Mental Health Data Infrastructure Grants for Quality ImprovementThe Mental Health Data Infrastructure Grants (DIG) for Quality Improvement were 3-year grants funded in 2001 with the purpose of developing data infrastructure in State mental health agencies for recording and reporting of the URS tables. Forty-nine States, the District of Columbia, and seven U.S. territories were initially funded at $100,000 per year to States and $50,000 to territories. A full matching in-kind provision by each State was required. In the 3 years of the grant effort, the definitions and reporting guidelines for the basic measures were principally addressed and completed. The effort was collaborative in that State data representatives and State planners participated monthly in workgroups with CMHS to refine measures, address appropriate methodologies, and determine feasibility for State reporting. Monthly regional grantee conference calls and annual grantee meetings furthered work on issues related to developing data infrastructure and reporting State and national measures. A second 3-year DIG cycle was initiated in 2004 in which 49 States, the District of Columbia, and eight U.S. territories received funding. CMHS increased the funding levels to $142,200 per year for States and $71,100 for territories, with continued full matching requirements. The goal of this second round is to continue work on recording and reporting of URS tables, with a focus on refining the developmental measures and the NOMs. The project will also address data infrastructure of local providers, Web-based reporting initiatives, and the DS2000+ standards and initiatives. All States and territories that accepted a DIG agreed to submit the URS tables as part of their Block Grant Annual Implementation Report, due December 1 of each year. Any States that did not apply for the DIG were encouraged to submit data under Section V. States that cannot provide data in the URS tables may use a companion “State Level Data Reporting Capacity Checklist” to describe their plans for implementing and reporting these data elements in future reporting. In 2004, SAMHSA announced the 10 NOMs that are the central focus for performance
measurement and national reporting. Over the next few years, SAMHSA intends
to move toward national reporting of outcomes and results of services for all
SAMHSA programs through the NOMs initiative. SAMHSA has already begun using URS data to calculate the first five NOMs. NOMs calculated from the 2002, 2003, and 2004 URS data are available as State and national rates via the SAMHSA Web site, http://www.nationaloutcomemeasures.samhsa.gov/outcome/index.asp. The Uniform Reporting System: Specific Purposes, Uses, and Content
The URS has several purposes: Principal uses of the URS data are to track the annual performance of all States and to produce national aggregate totals that provide information on service utilization and outcome of State mental health systems at the national aggregate level. As States vary in their programming and in the priority populations they are mandated to serve, it was determined that URS data would not be appropriate to make comparisons between States; however, it is anticipated that the URS information will assist State systems to monitor their own performance over time. In summary, the CMHS URS consists of 21 standardized tables (12 basic tables and 9 developmental tables) that SMHAs report each year. The URS data tables and performance measures were mostly derived from the NASMHPD Framework of Performance Measures (NASMHPD, 1997) and the MHSIP Consumer-oriented Report Card (Task Force, 1996), and many were developed and tested in the CMHS-funded 16-State Indicator Pilot Study (Lutterman et al., 2003). Historically, these documents were the result of much collaborative work implemented through the MHSIP, NASMHPD Research Institute, and the States and CMHS through a number of grant programs beginning in l996 that piloted selected indicators. In the 21 URS tables, the domains of access, appropriateness, outcome, service utilization, and cost provide the framework in which indicators such as penetration rates, use of State hospitals, length of stay, employment, homelessness, major funding sources of services, evidence-based services, readmissions to State hospitals, living situations, criminal justice involvement, and school attendance are selected. Development and Refinement of the Uniform Reporting SystemThe URS tables were published by SAMHSA/CMHS as part of the DIG application and were first included in the CMHBG application in 2001. Included in the URS tables was a set of specific data definitions for data elements identified in the tables. However, upon working with States, it was found that there was a need for further clarification of definitions, defining of sociodemographic categories and protocols for reporting, and refinements to the table design. CMHS, the contractor (SDICC/NRI), and the States decided to fully develop reporting guidelines for the tables, and a process of regular monthly, regional conference calls of all the States as well as topical workgroups was organized in response. Through this process, the URS tables have evolved through the first 3 years, with State as well as Federal input for developing common reporting elements. Scope of URS ReportingBased on the discussions by the State DIG grantee workgroups and the regional grantee conference calls, guidelines were developed for the scope of reporting of the URS tables. A basic tenet was that the “scope” of reporting should represent the mental health “system” that comes under the auspices of each State mental health agency. Persons are reported in the URS if they were considered part of the SMHA system and received services from programs funded or operated by the SMHA. Persons are counted in the URS if they could be identified in the system and if they received a face-to-face service during the reporting period. Specifically, the following guidelines were determined for including people in the URS reporting:
The following are not included in the URS tables:
The Data Infrastructure Grant and Refining the URS Data TablesIn the DIG process, CMHS developed a collaborative process to refine and operationalize the URS tables for State reporting. Every month, CMHS holds a set of regional conference calls to facilitate discussion between CMHS, the SDICC, and the State DIG project representatives. The conference calls started in October 2001 and have occurred regularly since then. The States are divided into three regions, each of which has a 1-hour conference call every month. A State mental health planner and State mental health data representative from each grant participates in each of these calls. These calls have been used to review the work of the SDICC and the grant effort in generating output tables, refining URS table definitions, and working on common and feasible reporting elements for the URS developmental and basic tables. In addition to the three regional DIG calls held each month, CMHS established a series of topical workgroups. In the first year of the grant, the four workgroups were Scope of Reporting, Unduplication, URS Definitions, and Consumer Surveys. In year 2, a new set of URS topical workgroups was initiated: Living Situation, Evidence-Based Practices (EBPs), Hospital Readmissions, Outcomes, Unmet Need/Untreated Prevalence, and Basic Tables Review. In year 3, topical workgroups on Outcomes and EBPs continued their work, and a new workgroup on two new measures, Symptoms Reduction and Social Connectedness, was created. Each of these workgroups conducted its work by conference calls and communicating by Internet. Special listservs were set up for many of the workgroups to facilitate sharing drafts of reports. Four of the topical workgroups that are currently working on refinements to the URS tables are described below. Unmet Need/Untreated Prevalence WorkgroupThis workgroup is addressing the URS Developmental Tables 13: Unmet Need and 14: Profile of Persons with SMI/SED Served by SMHA System. In table 13, a standardized methodology for national mental health prevalence has been recommended to estimate the number of persons in need of public mental health services and the number not currently receiving such services. This methodology will involve combining information on the overall prevalence of mental illnesses, income or insurance benefit information on consumers, and the rates of mental health service utilization. Table 14 requests that States report on the consumers served who met the Federal definitions of adults with serious mental illness (SMI) and children with serious emotional disturbances (SED). CMHS has developed a standardized methodology for estimating the prevalence of SMI in the general population. However, each State has developed its own unique definitions of adults with SMI and children with SED for reporting services and planning in the CMHBG. There is no current Federal methodology to determine if a person receiving State mental health services meets the Federal definition. The workgroup’s task is to consult with epidemiological experts to develop and test methodologies that can determine if persons being served by the SMHAs meet the Federal definitions of SMI and SED. Outcomes WorkgroupThe Outcomes workgroup has focused on URS table 19 and is addressing three outcomes measures: extent of client involvement in the criminal justice system, extent of client involvement in the juvenile justice system, and levels of school attendance for children with SED. In 2003, the Outcomes workgroup designed a survey for table 19 to garner information on how States were measuring these outcomes, and it was found that States were compiling measures in several different ways. Several States were linking administrative data sets from the SMHA with other State agencies, such as corrections or education, to measure the extent to which consumers are arrested, jailed, or convicted. Other States compiled this information routinely through their client assessment records as reported by staff members, such as case managers. Finally, several States compiled this information by consumer self-report in consumer surveys. In 2003, based on the experiences of States reporting on table 19, CMHS recommended that the Outcomes workgroup select consumer survey questions that would address these concerns and serve as the priority method for State reporting on table 19. These standardized questions are currently being pilot tested in several States. If the pilot test demonstrates that these questions work well, CMHS will ask all States to add these questions to their consumer surveys to allow uniform reporting. CMHS is encouraging States to continue to implement their original outcomes data approaches, as they continue to be useful to their programs. In 2005, the Outcomes workgroup is continuing to examine the results of the piloted consumer survey items and to refine the recommendations for reporting on table 19. Evidence-Based Practices WorkgroupThe Evidence-Based Practices workgroup has been working since 2003 to refine and revise URS tables 16, 17, and 18 on EBPs. The workgroup has expanded the number of EBPs to include all of the six SAMHSA/CMHS “toolkit” EBPs and additional child and adult services with strong research evidence. These include therapeutic foster care for children, multisystemic therapy for children, family functional therapy for children, supported housing services, and the use of new generation “atypical” antipsychotic medications for adults with diagnoses of schizophrenia. The workgroup developed a standardized reporting format for the EBP tables, including sociodemographics of persons receiving EBPs (age, gender, race, Hispanic/Latino status) and information on the fidelity of the practices provided (how, when, and by whom fidelity is measured). In 2005, the EBP workgroup is working with CMHS to provide additional guidance to States regarding the parameters on what defines EBP practices for reporting in the URS. Symptoms and Social Connectedness WorkgroupAs indicated earlier, in 2004 SAMHSA announced the selection of 10 NOMs that were to be reported annually. While the URS already included eight of these measures, two were new to the DIG/URS process: symptom reductions/improvement in functioning and social connectedness. A new workgroup was created during the summer of 2004 to address these two new indicators. The workgroup has surveyed States about how they are currently measuring these two outcomes measures, and has subsequently developed specific questions to be asked in modules and added to the consumer survey for piloting. In developing the module, questions proposed were reviewed by a focus group of consumers and family members and revised based on the group’s recommendations. A number of DIG grantee States have piloted these questions as part of their 2005 consumer surveys, and it is anticipated that final questions will be selected for implementation in States by January 1, 2006. State Submission of URS DataCMHS has worked with the SDICC at the NRI to develop multiple options for States to submit their URS reports electronically each year. A database was developed with Web-based data entry screens and built-in data edits to allow States to enter URS data directly into a URS database at NRI. In addition, Microsoft Excel spreadsheets were developed for each of the URS tables. The Excel sheets also include some built-in edits and allow States to enter data within their State and then e-mail their URS data to CMHS. As a final option, States are still permitted to send the URS data to CMHS as a hard copy portion of their annual CMHBG Implementation Report. Each year, before States report URS data, CMHS sends out a form to each of the SMHAs asking each SMHA commissioner to designate staff who would have access to the URS database to enter and edit data. This step was taken to meet the requirements that the SMHA commissioner approve data for the CMHBG Implementation Reports. All data entry and editing is controlled by a password-protected system. States may submit their URS data to the SDICC via an Internet-based electronic data entry system, by completing a set of standardized Excel spreadsheets, or by sending in paper copies of the URS tables. URS data are checked by both electronic and visual edits to every State’s data, and States are contacted to resolve data entry and quality issues. A set of draft output reports showing each State’s data and the national averages are prepared and sent back to the States for their review. After a State has determined that its data are clean and adequate for reporting, the data are marked as final in the URS database. URS ResultsStates are currently asked to report data for 19 of the 21 URS tables, as the two tables on State prevalence are provided by SAMHSA. During the first 3 years of the DIG process, States made substantial progress in developing the capacity to report the URS tables, as demonstrated by an annual increase in the number of tables reported and in the level of detail reported within the tables. Increase in URS Tables ReportedFigure 10.3 shows the increase in reporting of URS Tables during the first three years of the DIG/URS process. The total number of tables reported by SMHAs has increased from 541 tables in 2002, to 600 tables in 2003, and 663 tables in 2004. In the December 2004 cycle, every State, the District
of Columbia, and four territories submitted at least one table, and 11 States
submitted data for every URS basic table. The table that was reported the most
by SMHAs was table 2, information on the total number of consumers served by
age, gender, race, and ethnicity over the last year. Fifty-five
States and territories reported this information in 2004, covering 5.7 million
consumers. This was an increase from 50 States and territories reporting on
5.1 million consumers in 2003 and 51 States and territories reporting on 4.7
million consumers in 2002. States have also made major progress in reporting more detail about consumers served in the URS tables. For example, as shown in figure 10.5, the number of States able to report counts of clients served by age, gender, and race (table 2) have increased over the first 3 years of the DIG grants. Some States continue to have difficulty reporting on specific client characteristics. For example, reporting on consumers served by race and age was consistently lower than reporting on total clients served. Fewer States reported specific client characteristics in areas of employment status, living arrangements, homelessness, and Medicaid status. The URS includes several developmental tables (tables 13 to 21) that are still being refined and may require major changes in State data systems. As of 2004, fewer States were able to report on these tables. For example, only 18 States were able to report on the number of persons receiving EBPs. The developmental tables are now the focus of data infrastructure work by the States, and reporting on these tables is expected to improve. URS 2004 Reporting ResultsAccess to Mental Health Services (SAMHSA NOM 1)Fifty States, the District of Columbia, and four territories reported that they provided services to a total of 5.7 million persons during their latest fiscal year (2004 for most States). This means that approximately 1.93 percent of U.S. residents received mental health services from the public mental health systems in 2004. The numbers served by State ranged from 0.5 percent to over 3.98 percent. Several States were able to report only a “duplicated” count of clients—that is, some clients may be counted more than once. States that reported duplicated counts showed utilization rates of 2.2 percent of their State populations receiving mental health services, while States reporting unduplicated counts reported an average rate of 1.91 percent. Thirty-two States were able to report all unduplicated client data; other States are still working on methods to appropriately unduplicate their clients. Sixteen States reported that their counts remain duplicated in 2004. Four areas were a concern for States in duplication of client counts: (1) 15 States reported duplicated counts between State hospital and community services; (2) eight States reported that their community counts are duplicated, as county-based systems have unique client identifiers, so that consumers served in multiple counties are duplicated; (3) four States reported that they have duplicated reporting persons aged 17 to 18, as these age groups may be counted twice when they transition from child to adult mental health service systems; (4) some States relying on Medicaid managed care services may have difficulty in unduplicating clients across State and MHBG funding streams. Fourteen States report that they are using their DIG funds to achieve unduplication in their client counts. Demographic Characteristics of Persons Served by SMHAs: The majority of persons served by the State mental health agency system were White (62 percent), but a sizable number were minorities, with Black (20 percent) being the largest single minority group served (see figure 10.6 and table 10.2). Rates served by race (that is, dividing the numbers of minority persons served by their population) show that most minority groups were served at a higher rate than Whites (figure 10.6). However, caution must be exercised, because not all States have implemented the 2000 U.S. Census race categories. In particular, only 38 States were able to report on the numbers of Native Hawaiian/Pacific Islanders served, and 19 States are still reporting persons who are Hispanic using the old census grouping as a “race” instead of the new “Hispanic or Latino” origin. The URS data also demonstrate that the rates of utilization vary by age. Children aged 13 to 17 had the highest rates of mental health service utilization at 3.54 percent, followed by children aged 4 to 12 (at 2.21 percent) and adults aged 21 to 64 (at 2.09 percent). Rates were lowest for older adults (over age 65 were .83 percent and age 75 and over were .68 percent) and very young children (aged 0 to 3 had a rate of 0.27 percent) (figure 10.7). Females (51 percent) represented a slightly higher proportion of the population
served by SMHAs than males (48 percent) (see table
10.2). The rates of persons served by gender reflect similar results,
with 1.96 percent of females and 1.91 percent of males receiving mental health
services. Utilization of Community Mental Health Services and State Psychiatric Hospitals:
The vast majority of persons who receive SMHA-sponsored
mental health services receive them from community-based
mental health providers. Fifty-four
States and territories reported that
5.2 million persons were served in community-based
programs. Ninety-six percent of
all clients were reported as having received community mental health services.
Persons receiving services in State psychiatric hospitals numbered 166,929 (3.2
percent of clients), and 259,948 persons received inpatient services in settings
other than State hospitals (5.2 percent of clients). Some clients were served
in multiple settings during the year. State psychiatric hospitals showed much more turnover than community mental health services. At the start of the year, approximately 51,000 persons were in State psychiatric hospitals, while 170,000 persons were admitted to State psychiatric hospitals during the year. Thus, on average, several consumers use each State hospital bed during each year. Forty-five States reported information on the length of stay characteristics of patients in their State psychiatric hospitals. For patients who were discharged during the year, the median length of stay was 55 days for children and 54 days for adults. For patients who were still in the hospital at the end of the reporting period, children had been there a median of 76 days, and adults a median of 266 days. Twenty-nine States reported on the use of other psychiatric inpatient beds as part of their public mental health systems (beds in private psychiatric hospitals or general hospitals). These States reported that almost 260,000 persons received inpatient services from either general hospitals or private psychiatric hospitals during the year. States reported over 233,000 admissions to these other inpatient settings during the year. Thus, the data show that during 2004, many more consumers receive inpatient psychiatric services in alternatives to State psychiatric hospitals than in State hospitals. Consumer Perception of Care (NOM 2)The CMHS State Reform Grants in the late 1990s and the current Data Infrastructure Grants have greatly facilitated the SMHAs’ implementation of annual consumer perception of care surveys, resulting in reports on how consumers evaluate their access to services, the appropriateness of the services they receive, their level of participation in treatment planning, and the outcomes that result from the services they receive. Through the MHSIP program, CMHS supported the MHSIP Adult Consumer Survey that more than 44 States are now using to gather annual information on how consumers assess their care. The MHSIP Adult Consumer Survey was tested by prior work with States (Five-State Study and 16-State Study) and has demonstrated reliable results and validity on consumer perceptions of care. A factor analysis developed for the CMHS-funded Five-State and 16-State efforts led to the development of five domains of performance that are currently in the MHSIP Adult Consumer Survey:
During the 16-State Study, the need for a child- and adolescent-oriented survey was addressed. Based on the Adult MHSIP Survey, the Youth Services Survey-Families (YSS-F) was developed to focus on families’ perceptions of the care their children received from the mental health systems. The development of the survey was Molly Brunk, Ph.D., and a workgroup of collaborators led to a final version of the YSS-F with scoring algorithms to generate five domains:
CMHS strongly recommended that the MHSIP Adult Consumer Survey and the YSS-F Child Survey be implemented for URS reporting, as there is benefit in using common survey instruments for benchmark performance that can be calculated on data from States using the same instruments. States, however, may submit data on their own consumer surveys, as the primary purpose of the URS reporting system is to support within-State data comparisons over time. Adult Consumer Evaluation of Care: In 2004, 48 States and territories reported consumer survey results in their URS data (see figure 10.8). Of these States, 26 used the official 28-item version of MHSIP and 18 used a State variation of the MHSIP survey (where the State deleted one or more items or substituted unique State questions). Four States reported consumer survey results using their own unique (non-MHSIP-based) surveys. For the calculations of national rates, only data from the 44 States that submitted data using a MHSIP survey (official or State variation) are included. The 44 States that conducted the MHSIP survey reported on 99,531 responses, with a response rate that averaged 57 percent. As figure 10.8 shows, survey responses demonstrate that consumers rate access and quality/appropriateness of services higher than they rate the outcomes of services. Seventy-one percent of consumers rated the outcomes of the services they received as positive or very positive. States that conducted the official MHSIP survey (68 percent) and/or a variation of the MHSIP survey (75 percent) tended to have lower ratings of outcomes than States that used their own unique consumer surveys (85 percent). This pattern of the official MHSIP survey resulting in lower ratings of care than other surveys appears to be consistent across most of the domains covered by the consumer surveys. Thus, comparisons need to be made with caution and between States that used similar survey instruments. In addition to differences in the survey instrument used (see figure 10.9), States varied in regard to survey administration methodologies, survey sample methods, and populations surveyed. Because of these variations, comparisons of survey results between States remain problematic. Five States and territories reported that they sent surveys to all consumers served by the public mental health system. Forty States reported that they surveyed a sample of consumers. Sampling methods were as follows:
Most States (21) sampled from all consumers served, regardless of diagnosis, while 15 States focused their adult consumer surveys on adults with serious mental illnesses. Seven States focused on consumers in a Medicaid managed care program or other Medicaid program. States also used a variety of survey methodologies to conduct the surveys. Twenty-one States conducted face-to-face interviews, often using mental health consumers to conduct the interviews; 21 States conducted mail surveys, and 12 used telephone interviews. Several States used combinations of these methods to increase response rates. No States reported using Web-based surveys in 2004. Children/Family Evaluation of Care: Family evaluations of the care their children received showed a pattern similar to the adult consumer survey results: Parents rated the access to care (83 percent positive) and the quality of care (81 percent positive) higher than the outcomes that result from services (65 percent positive) (figure 10.10). Most States (29 of 41) reported on family evaluation of the care their children
received using the recommended Youth Services Survey-Family
survey, but 12 States used a different children’s mental health survey. Employment of Persons With Mental Illness (NOM 3)Serious mental illnesses often hamper the ability to obtain and retain employment. As a result of the low rates of employment among mental health consumers and the importance of obtaining and keeping a job as a part of many consumers’ recovery process, increasing the employment status of consumers is often a goal of mental health services and is one goal of the SAMHSA NOMs. While calculating the impact of the provision of mental health services on employment status of consumers is very difficult, the URS/DIG States are working with CMHS to identify and test methods to measure and monitor this impact. In the meantime, the URS data provide the first comprehensive picture of the current employment status of consumers in the public mental health systems. The number of persons reported as receiving mental health services and being competitively employed in 2004 was 522,307, a slight increase from 519,352 reported in 2003. The number of persons with employment status information increased to 2.45 million from 2.35 million people in 2003 (no employment status data were available for 29 percent of consumers). Two sets of employment rates were calculated for persons in the public mental health system (figure 10.12). The first calculation uses the U.S. Department of Labor approach to calculating employment rates. It measures what percentage of consumers were competitively employed relative to those “in the labor force” (both employed and unemployed, but excluding those persons “not in the labor force” who are not actively looking for work). The second calculation includes all persons with a known employment status in the denominator (employed + unemployed + not in labor force). The second approach yields much lower employment rates, since many mental health consumers are not in the labor force. Measure 1: U.S. Department of Labor approach: Thirty-seven
percent of mental health consumers (as a percentage of those in the labor force)
were competitively employed in URS 2004. Living Situation of Mental Health Consumers (NOM 4)The URS/DIG started compiling information about the living situation of consumers as a developmental table in URS year 2. States report on the last recorded living situation for consumers—either their living situation at discharge, or the last living situation in the consumer’s record for clients still receiving mental health services. In URS 2004 reporting, 39 States reported on the living situation of over 4 million consumers (table 10.4). States reported on nine different living situations for consumers and on the demographic characteristics of consumers living in each setting. Overall, 74.9 percent of consumers were living in a private residence. About 3 percent of consumers were homeless or living in a shelter, and 2.6 percent were in jail or other correctional settings. The living situation of consumers varies by age: Children (under age 18) are more likely to live in private residences (82.1 percent), foster care settings (5.3 percent), or children’s residential treatment centers (1.3 percent) than adults (table 10.5). Children were less likely than adults to be homeless or in shelters (0.8 percent), in institutional settings (2.4 percent), or in jail/correctional facilities. Adults are most likely to be in private residences (75.6 percent), institutional
settings—including psychiatric hospitals (6.1 percent), in residential
care (5.6 percent), homeless or in shelters (3.7 percent), or in jail/correctional
facilities (2.8 percent). Where mental health consumers live also varies by race: African American and Hispanic consumers were more likely to be living in jail and other correctional settings than other consumers. African Americans were also more likely than other groups to be homeless or living in institutional settings (figure 10.13). Readmissions to State Psychiatric Hospitals Within 30 and 180 Days (NOM 5)Readmission rates were added to the URS as a developmental table in URS year 2. This indicator compiles data for readmissions that occur within 30 days and 180 days of discharge to a State psychiatric hospital. In 2004, 40 States reported data for civil patients (both voluntary and involuntary admissions) and 28 States for forensic clients (table 10.7). Forensic clients are patients who are sent to the psychiatric hospitals from the courts owing to a criminal justice issue. Forensic clients include patients who are at the hospital for evaluations of competency to stand trial, clients found incompetent to stand trial, clients found not guilty by reason of insanity, clients found guilty but mentally ill, and in some States persons committed to a psychiatric hospital under a sexual offender statute. Readmissions to State psychiatric hospitals within 30 days were higher for civil status (both civil voluntary and involuntary status) patients (9.1 percent) than for forensic patients (4.6 percent). Readmissions within 180 days were also higher for civil patients (20.5 percent) than for forensic patients (12.5 percent). Readmissions (within both 30 days and 180 days) were higher for adults than children, with older adults having lower rates than average (figure 10.14). Readmissions of civil status Black/African Americans and American Indian/Alaskan Natives were higher than average, and readmission rates for Whites, Asians, and multi-racial consumers were lower than average. In addition to compiling information on readmission to State psychiatric hospitals, the URS is testing a measure of readmissions to any psychiatric inpatient facilities within the State. Since many States have drastically downsized their State hospitals and increasingly rely on general hospital psychiatric beds and private psychiatric hospitals, the measurement of readmissions to any psychiatric inpatient hospital within a State is a more comprehensive picture of the readmissions. Unfortunately, the necessary data from general hospital psychiatric units and private psychiatric hospitals are currently available in only a few States. In the 14 States that were able to report this broader measure in 2004, on average 14.6 percent of consumers had a readmission within 30 days and 23.2 percent had a readmission within 180 days. Developmental NOMs Measures and URS DataAs described above, five NOMs from developmental URS tables are currently being tested and finalized. Various approaches to compile the data needed for these developmental tables are being pilot tested across the States. The work on these five NOMs should be completed in 2006, and States will begin reporting on the additional NOMs through the URS process in December 2006:
The URS States are currently working with CMHS to test specific consumer self-report items related to the NOMs of social connectedness, level of functioning, arrests within the past year, and school attendance. These self-report items were developed due to the difficulty in obtaining outcomes data on them from administrative data sources in many States. In addition to testing self-report versions of these NOMs, the URS plans to implement a validation study comparing consumer self-report data on these measures to existing administrative data from the States. States are already reporting on the use of 10 different EBPs in developmental tables in the URS. The URS EBP workgroup is working with CMHS to refine the reporting guidance to States on these tables and to help develop NOMs-related measures from these tables. Additional URS Data TablesSome of the 21 URS tables do not directly relate to the calculation of the SAMHSA mental health NOMs, but rather reflect the needs of CMHS/SAMHSA for additional information about States’ use of the CMHBG. For example, URS tables 8 and 10 compile information about the uses of the CMHBG funds to pay for direct and nondirect services (figure 10.15). Table 12 compiles information from States about the mental health programs that are included in their reporting on other URS tables, as well as information on the level of duplication in their reporting universe. Table 7 incorporates data from the NASMHPD Research Institute’s annual State Mental Health Agency Revenues and Expenditures study regarding the $26.6 billion expended annually by SMHAs (figure 10.16). Next StepsEach year a set of State-specific output tables showing State-level data and regional and/or national averages is produced. The URS 2002, 2003, and 2004 State-level output reports are available on the SAMHSA Web site at http://mentalhealth.samhsa.gov/cmhs/MentalHealthStatistics/UniformReport.asp. As discussed earlier, the full URS data system includes 21 tables, and two additional SAMHSA National Outcome Measures that are being tested. Over the next year, final recommended operational definitions of all 10 mental health NOMs will be developed for State implementation. Change measures or measures to demonstrate improvement in consumer status due to mental health treatment will also be developed for implementation. In addition to these measures, some States are piloting new surveys related to consumer recovery as well as survey questions on cultural competence that can be added to the MHSIP Consumer Survey. Recovery and cultural competence are highlighted in the President’s New Freedom Commission as important goals for public mental health systems, thus supporting adequate information strategies to assess mental health programs. States continue to implement the enhancements to their information system infrastructure necessary to report data on the NOMs and the URS tables. As States continue to serve population groups that may vary in definition, and as States may have different methods of organizing and delivering mental health services, there is a need for caution when comparing URS data across States. Because of State variations, the primary uses of the URS data will continue to be aggregate national information, individual State reports, and comparisons within a State to assess year-to-year reports. The URS data set continues to be dynamic and is being adapted to reflect the changing needs of SAMHSA/CMHS and the States. It is hoped that the performance measures and data in the URS will become increasingly useful to program managers, consumers, family members, and funders who are working with State systems to improve the quality of mental health services throughout the Nation. The core of the effort is support of the use of data in decision making for improved planning at local, State, and national levels. |
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