Patterns Of Use And Costs Among Severely Mentally Ill People

At the Intersection of Health, Health Care and Policy Cite this article as: D M Steinwachs, J D Kasper and E A Skinner Patterns of use and costs among severely mentally ill people Health Affairs, 11, no.3 (1992):178-185 doi: 10.1377/hlthaff.11.3.178

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DataWatch

Patterns Of Use And Costs Among Severely Mentally Ill People by Donald M. Steinwachs, Judith D. Kasper, and Elizabeth A. Skinner Between two and four million individuals are severely mentally ill in 1 the United States, according to current estimates. In 1988, $55.4 billion was spent on the treatment of mental illness, with $23.3 billion of 2 this representing specialty mental health services. Although individuals with severe mental illness represent a small proportion (5–10 percent) of all individuals having a mental illness, it is estimated that they account for approximately 40 percent of specialty care expenditures and probably 3 about the same proportion of total expenditures. As a group they are of increasing policy concern because many lack health insurance, adequate housing, and income support. One indication of these problems is the 600,000 homeless adults in America, about one-third of whom suffer 4 from a severe mental illness. Social Security disability policies, Medicaid and Medicare eligibility and coverage policies, and state health policies largely determine whether or not individuals with severe mental illness have a regular source of income, have any health insurance, and receive the care they need. Severe and persistent mental illness is disabling and can deprive persons of the capacity to gain competitive employment, to live independently in the community, and to function effectively in family and social roles. Schizophrenia is the most common diagnosis associated with severe mental illness, yet not all individuals diagnosed with schizophrenia face severe and long-term disability. Other diagnoses associated with severe mental illness include major depression, bipolar affective 5 disorder, and personality disorder.

Donald Steinwachs is director of the Health Services Research and Development Center, The Johns Hopkins University, and the Center on Organization and Financing of Care for the Severely Mentally Ill, Johns Hopkins and the University of Maryland. He is a professor in the Department of Health Policy and Management of the Johns Hopkins School of Hygiene and Public Health. Judith Kasper and Elizabeth Skinner hold appointments in both centers; Kasper is an associate professor and Skinner, a research associate in the Department of Health Policy and Management. Downloaded from content.healthaffairs.org by Health Affairs on October 13, 2011 by guest

D ATAW ATC H 1 7 9 Severe mental illnesses are chronic conditions and, as do chronic medical conditions, require ongoing clinical management, crisis care for acute episodes, and rehabilitation to overcome the disabling effects of the illness. As a result, individuals tend to require a range of services to meet all of their needs. Medication therapy can be effective for many individuals in controlling the active symptoms of mental illness and, in combination with psychosocial and rehabilitation services, has been 6 found to help individuals to reduce the level of disability. Little information has been available on needs for care, insurance coverage, and service use by individuals with severe and persistent mental illness. The purpose of this DataWatch is to share the results of a recent national survey that provides new insights into how well the mental health care system is meeting the needs of persons with severe mental illness. Survey Of Persons With Severe Mental Illness The data presented here come from a 1991 national survey of members of the National Alliance for the Mentally Ill (NAMI), a national organization of families with severely mentally ill family members, which represents a unique source of information. The John D. and Catherine T. MacArthur Foundation funded a 1991 survey of NAMI families to provide information on the needs and unmet needs for care 7 among individuals with severe mental illness. The survey is nationally representative of NAMI. However, the generalizability of the findings are limited by the special characteristics of the NAMI families. They are part of an advocacy organization and tend to have higher educational levels and incomes than the national average. As a result of their advocacy, one might expect that the survey would show higher use of mental health services and fewer unmet needs for care than would be true for a representative group of severely mentally ill individuals, many of whom would not have family members involved in their care. The NAMI survey obtained a 81 percent response rate, with 1,401 members providing information on a mentally ill family member. Among these ill family members, 10.6 percent were psychiatric inpatients and 79.4 percent were resident in the community, most with a severe and disabling mental illness (66.8 percent of all mentally ill family members). The 936 people (66.8 percent) classified as severely and persistently mentally ill met two criteria: (1) They were receiving Supplemental Security Income (SSI) and / or Social Security Disability Insurance (SSDI) benefits or were not working or going to school, and (2) they had either a psychiatric hospitalization within the past two Downloaded from content.healthaffairs.org by Health Affairs on October 13, 2011 by guest

180 HEALTH AFFAIRS | Fall 1992 years or a current diagnosis of schizophrenia, major depression, or bipolar disorder. This definition of severe mental illness is only applicable to adults under age sixty-five. To include children or elderly people with severe disorders, additional diagnoses would be needed. The criteria used are reasonably consistent with definitions used by Howard Goldman and 8 colleagues and by the National Institute of Mental Health (NIMH). The results discussed here pertain to the two-thirds of the NAMI population who were resident in the community and met criteria for having a severe and persistent mental illness. Insurance coverage. Severe mental illnesses and their associated disabilities reduce a person’s capacity to earn an income and impede access to private health insurance, which usually comes through an employer. Among those with a severe mental illness living in the community, however, 9.4 percent had no insurance and 9.1 percent had only private insurance. The relatively low percentage of uninsured people appears to be a result of higher-than-average rates of success in obtaining disability coverage: 51.3 percent were covered by SSI and 5 1.8 percent by SSDI, with 20.6 percent covered by both. SSDI provides Medicare coverage after a two-year waiting period, and SSI provides Medicaid coverage with no waiting period. Medicaid coverage was reported by 52.4 percent and Medicare coverage by 46.4 percent, with 20.8 percent having both. In addition, some individuals qualify for veterans’ disability benefits if the illness is service connected. Only 5.3 percent in this group reported receiving veterans’ benefits. It appears that severely mentally ill veterans are underrepresented in the NAMI survey. Needs for care. All individuals with a severe and persistent mental illness would be expected to need ongoing clinical management of their mental illness. Current diagnoses in this group were reported to include schizophrenia (65.5 percent), bipolar disorder (29.8 percent), major depression (21.0 percent), personality disorder (17.2 percent), other paranoid or delusional disorders (23.2 percent), alcohol abuse disorder (8.8 percent), and drug abuse disorder (4.8 percent). As these percentages suggest, individuals frequently have multiple mental disorders, and almost half (46.2 percent) reported ongoing physical health problems. Responses by family members to the NAMI national survey indicate that substantial proportions of mentally ill family members have specific needs for assistance or supervision (Exhibit 1). For instance, 59.3 percent need help with illness management; 67.9 percent need help with crisis management; 23.1 percent need help with activities of daily living (ADLs), such as bathing, dressing, and personal hygiene; 74.3 percent need help with community living skills (such as shopping and managing money); 64.7 percent need help with establishing and maintaining Downloaded from content.healthaffairs.org by Health Affairs on October 13, 2011 by guest

D ATAW ATC H 1 8 1 Exhibit 1 Needs And Unmet Needs For Care Among Severely Mentally Ill People Resident In The Community, 1991

Source: Survey of National Alliance for the Mentally III membership, 1991. Note: N = 936. a ADL is activities of daily living. b Activities such as housework, shopping for groceries, preparing meals, and managing money.

friendships; and 72.8 percent need help with gaining and maintaining productive activities (for example, daily activities ranging from structured day programs to school or employment). The survey found that for some categories of need, substantial proportions of individuals were receiving no assistance at all (Exhibit 1). Not receiving any assistance ranges from a low of 2 percent in crisis care to a high of 67 percent in needs related to productive activities. Mental health service system. There can be a variety of reasons why needs for care are not met. Services may not be available or, if available, may not be accessible if not covered by health insurance. Also, services may not be well suited to the individual’s needs or may be refused. The survey findings suggest that all of these problems occur to varying degrees. For example, structured day programs, such as psychosocial, day hospital, and vocational rehabilitation programs, would be expected to meet needs for ongoing productive activities. In only half of the cases (51.2 percent) where assistance was needed with productive activities did family members report that an attempt had been made to find a structured day program; in one out of four, none was available. Among the 45.2 percent who did not seek a program, approximately one-third had no need for a structured day program, almost half said the mentally ill family member would refuse help, and one in six reported that they 9 believed no programs were available. Thus, both lack of availability and lack of acceptability represent major reasons for individuals not to receive services that would be expected to meet an existing need. Downloaded from content.healthaffairs.org by Health Affairs on October 13, 2011 by guest

182 HEALTH AFFAIRS | Fall 1992 Use Of Services By Severely Mentally Ill Persons The NAMI survey provides a national perspective on the mix of mental health and medical services used by individuals with severe and persistent mental illness. In Exhibit 2, utilization characteristics for mental health services are shown for NAMI family members residing in the community. Approximately 30 percent of these individuals had been hospitalized during the past year for their mental disorder. Information on the number of hospitalizations in the past year was not obtained, only on the number of lifetime hospitalizations; the average is 4.7 psychiatric hospitalizations. Almost 90 percent have used mental health services during the previous six months, with an average of 18.7 visits among those with a visit. If this rate of utilization is annualized for the entire group, it comes to an average of 33.4 mental health visits per person per year. Exhibit 3 shows the use of medical services among the mentally ill. Almost 12 percent were hospitalized for a medical condition during the past year, and those hospitalized experienced over one and a half hospitalizations during the year. Almost two-thirds had a visit for a medical problem over the previous six months, with an average of 3.4 visits. The annualized rate of medical visits for the entire group comes to 4.4 visits per person per year. These rates of utilization are reasonably comparable to rates of use found in a study of all severely mentally ill persons enrolled in the Exhibit 2 Use Of Mental Health Services By Severely Mentally Ill Individuals, By Age And Sex, 1991 Hospitalized for mental illness in past year

Mean number of mental health visits (for those with a visit)

Percent

Number

Percent with mental health visit in past six months

Total

30.4%

874

89.4%

18.7

Female Under age 25 Age 25–34 Age 35–44 Age 45 and older

38.4 34.4 25.3 31.3

23 93 99 96

92.0 89.6 87.2 81.1

22.7 23.0 18.3 12.5

Male Under age 25 Age 25–34 Age 35–44 Age 45 and older

35.4 32.9 30.2 20.0

48 246 192 77

95.8 92.2 91.8 82.3

26.1 18.5 17.6 16.5

Source: Survey of National Alliance for the Mentally Ill membership, 1991. Downloaded from content.healthaffairs.org by Health Affairs on October 13, 2011 by guest

D ATAW ATC H 1 8 3 Exhibit 3 Use Of Medical Care By Severely Mentally Ill Individuals, By Age And Sex, 1991 Hospitalized for medical illness in past year

Mean number of hospitalizations (for Medical visit in those hospitalized) past six months

Mean number of medical visits (for those with a visit)

Number Percent of persons Mean

Num ber Num ber of persons Percent of persons Mean

Num ber of persons

Total

11.8%

926

1.59

107

Female U n d eage r 25 Age 25–34 Age 35–44 Age 45 and older

16.0 13.1 11.9 20.2

25 99 101 99

1.25 1.08 1.17 1.65

4 13 12 20

Male Underage 25 Age 25–34 Age 35–44 Age 45 and older

2.0 8.8 11.8 13.6

50 251 204 81

1.00 1.64 1.83 2.09

1 22 24 11

63.7%

844

3.42

538

68.2 66.3 79.5 73.9

22 92 83 88

3.87 3.48 3.59 4.35

15 61 66 65

62.5 57.4 56.5 69.2

48 242 191 78

2.33 3.12 2.92 4.26

30 139 108 54

Source: Survey of National Alliance for the Mentally Ill membership, 1991.

10

Maryland Medical Assistance Program (Medicaid). Among adults ages twenty-one to sixty-four in this population, for ambulatory medical and mental health visits combined, the annual average was forty-three visits, compared with the NAMI average of thirty-eight (33.4 mental health visits plus 4.4 medical visits). The percentage hospitalized during the year for a mental disorder was also reasonably comparable: 30 percent for NAMI and 26 percent for Maryland Medicaid enrollees. In general, one would expect the Maryland Medicaid ambulatory utilization rates to be somewhat higher, since the population was selected based on diagnostic information obtained from a service claim during the year. Hospitalizations for mental disorders, however, are underrepresented in the Medicaid database, since admissions to state mental hospitals are not covered by the program. The average payments in 1986 by Maryland Medicaid for the 3,186 individuals identified as having a severe mental illness came to $5,034 per person. Comparable payment data are not available from the NAMI survey. Although NAMI is a self-selected group, use of services by mentally ill family members (52.4 percent of whom are covered by Medicaid) is reasonably similar to that of Maryland Medicaid enrollees who met criteria for severe and persistent mental illness. This suggests that the NAMI utilization experience may be relevant for severely mentally ill persons nationwide. Downloaded from content.healthaffairs.org by Health Affairs on October 13, 2011 by guest

184 HEALTH AFFAIRS | Fall 1992 Discussion Persons who are disabled because of a severe mental illness have a broad range of needs for assistance, many of which are currently not being met by the health care system. Our findings argue for the increasing importance of better information on patterns of use that can be linked to measures of need to determine what types of care are effective in meeting needs and ultimately in improving patient outcomes. Families report that needs are not being met for several reasons: Services are not available or, if available, are sometimes refused by the person needing them. The acceptability and effectiveness of services are not issues unique to mental health care. They are increasingly viewed as critical issues in assuring high-quality health care at a reasonable cost. Availability of and access to services continue to be national health policy concerns that are inextricably linked to the structure of health care financing. For severely mentally ill individuals, there is a primary reliance on publicly funded care–Medicare, Medicaid, and other statesupported services. Even when an individual has private health insurance, limits on mental health services coverage, not usually imposed on medical and surgical services, practically assure that benefits will be 11 exhausted early in the course of the illness. As states face increasing fiscal pressures and the federal government looks for cost containment options in the Medicare and Medicaid programs, there is growing concern that needs for care among severely mentally ill individuals will be more poorly met in the future than they are today. There is concern as well about costs of care to the severely mentally ill. However, it is not clear that improvements in meeting their needs will cost more than is currently spent. Past research has found that comprehensive community-based care for severely mentally ill individu12 als was no more expensive than institutional care. Better communitybased care can reduce rates of hospital admissions and should reduce the risk of homelessness, arrest, and incarceration, all of which are accompa13 nied by substantial costs. Debates on national health system reform in the 1990s should examine broadly the complex issues of insurance coverage for individuals with severe and disabling illnesses. Extending acute care health insurance to the uninsured is only one piece of what is needed. For those with severe and persistent mental illness, comprehensive coverage is required that spans acute care, long-term care, and rehabilitation. Unless insurance pays for a comprehensive array of services, severely mentally ill people and their family members will continue to encounter a system of services that fails to meet their needs. Downloaded from content.healthaffairs.org by Health Affairs on October 13, 2011 by guest

D ATAW ATC H 1 8 5 The driving energy and vision behind this study belonged to the late Carl A. Taube, who built a bridge between family advocacy and mental health services research. The advice and guidance of Laurie Flynn, executive director of the National Alliance for the Mentally Ill (NAMI) , are greatly appreciated. This study was supported by a gram from The John D. and Catherine T. MacArthur Foundation to NAMI. NOTES 1. National Institute of Mental Health, Caring for People with Severe Mental Disorders: A National Plan of Research to Improve Services, DHHS Pub. no. (ADM) 91-1762 (Washington: U.S. Government Printing Office, 1991). 2. J.H. Sunshine et al., “Expenditures and Sources of Funds for Mental Health Organizations: United States and Each State,” NIMH Statistical Note 199, DHHS Pub. no. (ADM) 91-1829 (Rockville, Md.: NIMH, 1991). 3. H.H. Goldman and R.G. Frank, “Evaluating the Costs of Chronic Mental Disability” (Presentation to the Conference on the Economics of Disability, Washington, D.C., 1985). 4. Outcasts on Main Street: Report of the Federal Task Force on Homelessness and Severe Mental Illness, DHHS Pub. no. (ADM) 92-1904 (Washington: Interagency Council on the Homeless, 1992). 5. NIMH, Caring for People with Severe Mental Disorders. 6. G.E. Hogarty et al., “Family Psychoeducation, Social Skills Training, and Maintenance Chemotherapy in the Aftercare Treatment of Schizophrenia,” Archives of General Psychiatry 43 (1986): 633–642; and L. Stein and M.A. Test, “Alternative to Mental Hospital Treatment: I. Conceptual Model, Treatment Program, and Clinical Evaluation,” Archives of General Psychiatry 37 (1980): 392–397. 7. D.M. Steinwachs, J. Kasper, and E.A. Skinner, Family Perspectives on Meeting the Needs for Care of Severely Mentally Ill Relatives: A National Survey (Final report to the National Alliance for the Mentally Ill by the Johns Hopkins University and University of Maryland Center on Organization and Financing of Care for the Severely Mentally Ill, Baltimore, Maryland, July 1992). 8. H.H. Goldman, A.A. Gattozzi, and C.A. Taube, “Defining and Counting the Chronically Mentally Ill,” Hospital and Community Psychiatry 32 (1981): 21–27; A.P. Schinnar et al., “An Empirical Literature Review of Definitions of Severe and Persistent Mental Illness,” American Journal of Psychiatry 147 (December 1990): 1602–1608; and NIMH, Caring for People with Severe Mental Disorders. 9. The remaining 3.5 percent reported that they did not know if a structured day program had been sought. 10. D.M. Steinwachs et al., Medicaid Financing for the Severely Mentally Ill (Final report to the National Institute of Mental Health by the Johns Hopkins University and University of Maryland Center on Organization and Financing of Care for the Severely Mentally Ill, Baltimore, Maryland, 1992). 11. See R.G. Frank, H.H. Goldman, and T.G. McGuire, “A Model Mental Health Benefit in Private Health Insurance,” in this volume of Health Affairs. 12. B.A. Weisbrod, M.A. Test, and L.I. Stein, “Alternative to Mental Hospital Treatment: II. Economic Benefit-Cost Analysis,” Archives of General Psychiatry 37 (1980): 400– 405. 13. Hogarty et al., “Aftercare Treatment of Schizophrenia;” and Outcasts on Main Street. Downloaded from content.healthaffairs.org by Health Affairs on October 13, 2011 by guest