Cost of Mental Health Care

Section 4 Cost of Mental Health Care Per capita mental health spending for Americans with a mental health diagnosis has increased among children, peaking in. For adults, the spending has been more stable. The majority of users ages 18 to 64 are covered by private insurance, while among children, there is an increasing share of Medicaid/SCHIP coverage. Out-of-pocket spending has declined both for general mental health services as well as highexpenditure cases for all age groups. Despite these trends, affordability of mental health care services has not improved, particularly among families with children, while the affordability of prescription drugs has improved slightly in recent years. 42 National Center for Children in Poverty

System-level Spending Per capita mental health spending for Americans with a mental health diagnosis, in dollars, has increased among pediatric service users, reaching $1,684.60 in from $938.42 in 1996. The greatest increase in spending occurred after 2000, though it declined slightly in. As a share of total health spending, however, mental health expenditures for children have been relatively stable. Children s mental health accounts for the largest share of total health spending for any age group. Per capita mental health spending for people with a mental health diagnosis in dollars and as a share of total health spending Children ages 4-17 $1,800 $1,500 $1,200 $900 $600 $300 $0 Adults ages 18-64 $1,800 Total MH spending Total MH spending % MH share % MH share 6 5 4 3 2 1 6 Adult mental health spending (in dollars), has remained fairly stable since 1996. As a share of total health spending, however, mental health costs have declined slightly, from nearly 28 percent to 25 percent. $1,500 $1,200 $900 $600 5 4 3 2 While this age group used to have the higher per capita, children s per capita mental health spending has been increasing and now accounts for a higher share than adults. $300 $0 Adults ages 65+ $1,800 Total MH spending % MH share 1 6 Older adults mental health spending, as measured in dollars, has remained fairly stable since 1996, ranging from around $600 to $1,200. $1,500 $1,200 $900 5 4 3 $600 2 $300 1 Data source: MEPS $0 Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 43

Heath Insurance Coverage Children ages 4-17 Since 2001, there has been a shift from private insurance coverage to Medicaid, and more than half of children with a mental health problem were covered by Medicaid in. The percentage of uninsured children with a mental health problem also reduced by half from 15 percent in 2001 to eight percent in. The share of children s psychiatrist visits paid by private insurance declined from 1996 to, but increased again in. In contrast, the share of Medicaid has increased from about 26 percent in 1996 to about 44 percent in ; however, it has since declined by about half. The share of self-pay declined slightly from 1996 to, varying considerably over time. Health insurance coverage of children with a mental health problem 6 5 4 3 2 1 10 8 6 4 2 Privately-insured Medicaid/SCHIP Uninsured Other '08 These categories are not exclusive. Coverage of psychiatrist visits for children, by payor Private Medicaid Self-pay The share of pediatric mental health hospitalizations paid by private insurance has been stable over time and is still the most common payment method for inpatient mental health services. The share of Medicaid payments has increased slightly over time to about 24 percent in from 20 percent in 1996. Coverage of mental health hospitalizations for children, by payor 10 8 6 4 2 Private Medicaid Medicare Self-pay Data source: MEPS, NAMCS and NHDS 44 National Center for Children in Poverty

Heath Insurance Coverage Adults ages 18-64 Unlike children s health insurance coverage, about onefourth of adults with a mental health problem are covered by Medicaid, and this trend is stable over time (except ). About 40 percent of adults were covered by private insurance in ; there was a slight increase in the share of uninsured from 19 percent in to 21 percent in. The share of adult mental health care covered by private insurance has increased for psychiatric visits. Private insurance is the majority payor of adult mental health services, covering more than half of psychiatric visits since 2001. Self-pay coverage has declined from 35 percent in 1995 to 19 percent in. The share of Medicare has been relatively stable, below 10 percent in most years; while the share of Medicaid has been increasing over time, from nine percent in 1995 to about 15 percent in. Similar to the trends among children, the share of adult mental health hospitalization care covered by Medicaid has increased slightly, from 20 percent in 1996 to 24 percent in. Overall, the share of private insurance for covering adult mental health hospitalization declined from 54 percent in 1996 to 49 percent in. Data source: NAMCS and NHDS Health insurance coverage of adults with a mental health problem 7 6 5 4 3 2 1 These categories are not exclusive. Coverage of psychiatrist visits for adults, by payor 10 8 6 4 2 Private Medicaid Medicare Self-pay '95 Coverage of mental health hospitalizations for adults, by payor 10 8 6 4 2 Private Medicaid Medicare Uninsured Other Private Medicaid Medicare Self-pay Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 45

Heath Insurance Coverage Adults ages 65+ The share of psychiatric visits for older adults paid by private insurance declined by half, from 21 percent in to 10 percent in. The share of self-pay increased from six percent in to 11 percent in. The share of Medicaid coverage varies considerably by survey year, but in, the share was 11 percent. Coverage of psychiatrist visits for adults, by payor 7 6 5 4 3 2 1 Private Medicaid Medicare Self-pay These categories are not exclusive. The coverage of mental health hospitalization for older adults has been stable over time and the majority is covered by Medicare. Coverage of mental health hospitalizations for adults, by payor 10 8 Private Medicaid Medicare Self-pay 6 4 2 Data source: NAMCS and NHDS 46 National Center for Children in Poverty

Mental Health Out-of-Pocket Spending with a Mental Health Diagnosis Children ages 4-17 Mental health out-of-pocket spending for children increased slightly between 1996 to from $214 to $228. Mental health out-of-pocket spending with a mental health diagnosis, in dollars $500 $400 $300 $200 $100 $0 While children s mental health out-of-pocket spending has increased in absolute dollars, spending as a percentage of mental health spending and total health out-of-pocket spending has declined. In, there was a considerable decline, which may be due to the survey data. In, the out-of-pocket share was approximately one quarter of mental health spending for children. Mental health out-of-pocket spending with a mental health diagnosis, as a share of mental health and total health out-of-pocket spending 6 5 4 3 2 1 Mental health General health Total out-of-pocket spending for children with a mental health diagnosis as a share of percentage of family income represented about three to five percent in average between 1996 and, then declined to two percent in. Mental health out-of-pocket spending with a mental health diagnosis, as a percentage of family income Mean 12% 9% 6% Median 3% Data source: MEPS Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 47

Mental Health Out-of-Pocket Spending with a Mental Health Diagnosis Adults ages 18-64 The out-of-pocket spending for adult mental health care was $300 in, the highest among the age groups. Mental health out-of-pocket spending with a mental health diagnosis, in dollars $500 $400 $300 $200 $100 $0 As a share of mental health spending, adult mental health out-of-pocket costs have been stable, declining from 42 percent in 1996 to 37 percent in. As a share of general health spending, adult mental health out-of-pocket costs have declined considerably, from 38 percent in 1996 to 28 percent in. Mental health out-of-pocket spending with a mental health diagnosis, as a share of mental health and total health out-of-pocket spending 6 5 4 3 2 1 Mental health General health As a percentage of household income, both adult median and mean out-of-pocket costs have been stable, around one to 1.5 percent and five to six percent, respectively. Mental health out-of-pocket spending with a mental health diagnosis, as a percentage of family income Mean 12% 9% Median 6% 3% Data source: MEPS 48 National Center for Children in Poverty

Mental Health Out-of-Pocket Spending with a Mental Health Diagnosis Adults ages 65+ Mental health out-of-pocket spending for older adults rose most dramatically from 1996 to 2000, then declined steadily. In, the average mental health out-of-pocket spending was $146. Mental health out-of-pocket spending with a mental health diagnosis, in dollars $500 $400 $300 $200 $100 $0 The out-of-pocket cost for mental health services for older adults, as a share of mental health and total outof-pocket health spending, declined from 40 percent in 1996 to 30 percent in. Mental health out-of-pocket spending with a mental health diagnosis, as a share of mental health and total health out-of-pocket spending 6 5 4 Mental health General health 3 2 1 Both median and mean out-ofpocket spending as a share of family income for older adults with a mental health diagnosis are highest compared with other age groups. The mean out-of-pocket spending increased from 1996 to and then declined to the same level in (around eight percent). Mental health out-of-pocket spending with a mental health diagnosis, as a percentage of family income Mean 12% 9% 6% 3% Median Data source: MEPS Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 49

Out-of-Pocket Share for High Expenditure Mental Health Care The seventy-fifth percentile for out-of-pocket spending with a mental health diagnosis, who held private insurance fullyear had mental health expenditures greater than $300 in dollars. High expenditure mental health care for children declined from 57 percent in 1996 to 42 percent in. High expenditure mental health out-of-pocket spending Children ages 4-17 7 6 5 4 3 2 1 High expenditure mental health care for adults, ages 18 to 64, declined from 50 percent in 1996 to 36 percent in. Adults ages 18-64 7 6 5 4 3 2 1 High expenditure mental health care for older adults declined from 44 percent in 1996 to 28 percent in. This was the largest decline among all age groups. Adults ages 65+ 7 6 5 4 3 2 1 Data source: MEPS 50 National Center for Children in Poverty

Affordability of Professional Services Children ages 4-17 There is an increasing percentage of families with a child with a mental health problem reporting difficulty in affording mental health professional care. This reached its peak in at 12 percent. Percentage of children with a mental health problem reporting difficulty in affording mental health professional care 35% 3 25% 2 1 5% Overall, the increasing rate for difficulty in affording mental health professional care for children does not differ by race/ethnicity in. For Hispanic children, the reported difficulty in affording professional services increased gradually, while for white and black children, it varied considerably by survey year. Percentage of children with a mental health problem reporting difficulty in affording mental health professional care, by race/ethnicity 4 35% 3 25% 2 1 5% White Black Hispanic Data source: NHIS Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 51

Affordability of Professional Services Children ages 4-17 Low-income families with children were more likely to experience difficulties in paying for mental health professional care for their children than higher-income families in. The affordability of professional mental health services for children worsened regardless of family income status, doubling for low-income families and increasing by four percent for higher-income families from to. Percentage of children with a mental health problem reporting difficulty in affording mental health professional care, by income level <20 FPL 20+ FPL 3 25% 2 1 5% Rates of difficulty in affording care have increased across all insurance types, while those with Medicaid experienced the lowest increase from to. Close to one-third of children without insurance experienced difficulty in affording mental health care in. Rates of difficulty in affording care has more than doubled among those with private insurance from to. Percentage of children with a mental health problem reporting difficulty in affording mental health professional care, by insurance type 45% 36% 27% 18% 9% Private Medicaid * Uninsured *No data available for Medicaid and Uninsured. Data source: NHIS 52 National Center for Children in Poverty

Affordability of Professional Services Adults ages 18-64 Of all age groups, adults ages 18 to 64 most frequently reported difficulty in affording the care they need. While the rates have increased at various points, they remained relatively between and, around 20 percent. Percentage of adults with a mental health problem reporting difficulty in affording mental health professional care 35% 3 25% 2 1 5% There are increasing rates of difficulty in affording mental health care for whites and blacks, while it has become more stable among Hispanic adults. In, the rate of difficulty for blacks was 32 percent, while only 23 percent for whites and 16 percent for Hispanics. Percentage of adults with a mental health problem reporting difficulty in affording mental health professional care, by race/ethnicity 4 35% 3 25% 2 1 5% White Black Hispanic Data source: NHIS Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 53

Affordability of Professional Services Adults ages 18-64 Close to one-third of lowincome adults reported having difficulty in affording professional care in. The rates for higher income adults were close to 20 percent in, and increased about eight percent after. Percentage of adults with a mental health problem reporting difficulty in affording mental health professional care, by income level <20 FPL 20+ FPL 3 25% 2 1 5% The uninsured reported much higher rates in difficulty affording professional care than did adults with private insurance or Medicaid. The rates of reporting difficulty among the privately or publicly insured have both increased from 13 percent in to nearly 20 percent in. Percentage of adults with a mental health problem reporting difficulty in affording mental health professional care, by insurance type 45% 4 35% 3 25% 2 1 Private Medicaid Uninsured 5% Data source: NHIS 54 National Center for Children in Poverty

Affordability of Professional Services Adults ages 65+ Of all age groups, older adults reported the lowest rates of difficulty in affording care, about 10 percent in. Percentage of adults with a mental health problem reporting difficulty in affording mental health professional care 35% 3 25% 2 1 5% Data source: NHIS Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 55

Affordability of Mental Health Prescription Drugs Children ages 4-17 The percentage of families with a child reporting difficulty in paying prescription drugs remained stable at less than 10 percent during all the survey year periods. Percentage of children with a with a mental health problem reporting difficulty in affording prescription drugs 1 8% 6% 4% 2% No data for and were available due to small sample size. Hispanic households with a child were more likely to report having difficulty in affording mental health medication in. About 10 percent of black households with a child reported difficulty in paying for medication; the rates have slightly declined, from 12 percent in to 10 percent in. The percentage of white households with a child reporting difficulty in affording medication has declined from about nine percent in to only four percent in. Percentage of children with a mental health problem reporting difficulty in affording prescription drugs, by race/ethnicity 2 1 5% White Black Hispanic Data source: NHIS 56 National Center for Children in Poverty

Affordability of Mental Health Prescription Drugs Children ages 4-17 Not surprisingly, low-income families with children are more likely to report difficulty in affording prescription drugs than their higher-income counterparts, but the gap is declining. In, about 10 percent of low-income families with children reported difficulty, but the rate has declined since. Percentage of children with a mental health problem reporting difficulty in affording prescription drugs, by income level <20 FPL 20+ FPL 18% 12% 9% 6% 3% No data for and were available due to small sample size. There are increasing rates of difficulty in affording prescription drugs among uninsured children, from about 33 percent in to 45 percent in. The reported rate of difficulty remained stable among children with Medicaid, while among children with private insurance, the rate has declined from six percent to three percent in. Percentage of children with a mental health problem reporting difficulty in affording prescription drugs, by insurance type 45% 36% 27% 18% 9% Private Medicaid Uninsured Data source: NHIS Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 57

Affordability of Mental Health Prescription Drugs Adults ages 18-64 Adults were more likely to experience difficulty in affording care than any other age group. The rate was about 30 percent and stable between and. Percentage of adults with a mental health problem reporting difficulty in affording prescription drugs 4 35% 3 25% 2 1 5% White and black adults were more likely to report difficulty in paying for prescription drugs than Hispanic adults. In, the rates were 33 percent for blacks, 32 percent for whites and 25 percent for Hispanics. Percentage of adults with a mental health problem reporting difficulty in affording prescription drugs, by race/ethnicity 5 4 3 White Black Hispanic 2 1 Data source: NHIS 58 National Center for Children in Poverty

Affordability of Mental Health Prescription Drugs Adults ages 18-64 Low-income adults were more likely to report difficulty than higher-income adults, though the rates of difficulty declined among low-income adults and increased among higherincome adults over the survey period. Percentage of adults with a mental health problem reporting difficulty in affording prescription drugs, by income level <20 FPL 20+ FPL 5 4 3 2 1 More than half of uninsured adults reported experiencing difficulty in affording prescription drugs. The rates for adults with private insurance have increased from 14 percent in to 23 percent in, while the rates among those with Medicaid have been stable around 25 percent. Percentage of adults with a mental health problem reporting difficulty in affording prescription drugs, by insurance type 6 5 4 3 2 1 Private Medicaid Uninsured Data source: NHIS Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 59

Affordability of Mental Health Prescription Drugs Adults ages 65+ The rates of reporting difficulty in affording prescription drugs have been somewhat stable among older adults with a noticeable spike in. Percentage of adults with a mental health problem reporting difficulty in affording prescription drugs 35% 3 25% 2 1 5% Data source: NHIS 35% 60 National Center for Children in Poverty

Section 5 Quality of Care Various surveys suggest that quality of mental health care has improved over the past decade; use of restraints in inpatient care has decreased or remained stable while the share of people receiving appropriate care for depression, bipolar disorder, and schizophrenia has increased. Unfortunately, national survey data on quality measures is not available, so we are forced to rely on local data (here, Florida Medicaid) to reach these conclusions. It is possible that this local data may only reflect local patterns of care, rather than representing a national trend. Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 61

Quality of Inpatient Mental Health Care Overall, year-end rates of restraint use in inpatient psychiatric patients were stable over time. Restraint use declined between 2000 and, a change largely driven by reduced rates among adult patients. Data among children was less stable over time than the adult pattern. The rates for children are about 10 percent, while less than five percent among adults. Percentage of mental health patients that were restrained Overall Adults ages 25-44 Children ages 13-17 Adults ages 65+ 12% 1 8% 6% 4% 2% 2000 2001 2002 Data source: NASMHPD Resource Institute Quality of Care in Bipolar Treatment The share of Florida Medicaid beneficiaries with bipolar disorder that received appropriate medications improved markedly between 1995 and. Overall, the percentage of bipolar patients receiving a recommended drug more than doubled from 32 percent to 66 percent over the period. The increase was driven largely by the expanded use of atypical antipsychotic agents, whose use in treating bipolar patients increased from four percent in 1995 to 54 percent in. Percentage of bipolar patients treated with appropriate medication 7 6 5 4 3 2 1 Anti-manic Atypical anti-psychotics Any appropriate care '95 Data source: Florida Medicaid 62 National Center for Children in Poverty

Quality of Care in Depression Treatment Patient insurance status Trends suggest that there has been some improvement in the management of antidepressant acute care for privately insured patients, yet most of the improvements occurred between 1998 and 2002. Since then only slight improvement has occurred. Treatment rates for Medicaid patients have been flat at around 46 percent. Patients receiving acute treatment for depression 7 6 5 4 3 2 1 2001 2002 Private Medicaid Similarly, evidence exists for slight improvement in depression continuation treatment, with greater improvement for the privately insured (from 40 percent to 45 percent). Medicaid treatment rates have been flat over the study period, around 30 percent. Patients receiving appropriate continuation treatment for depression 5 4 3 2 1 2001 2002 In the provider-contact dimension of care, little improvement has occurred in depression treatment. Treatment rates for Medicaid beneficiaries increased only slightly, from 19 percent in 2001 to 21 percent in. Patients receiving appropriate provider contact 25% 2 1 Among the privately insured, the rate has been stable at around 20 percent. 5% 2001 2002 Data source: HEDIS Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 63

Quality of Schizophrenia Treatment Quality of schizophrenia treatment According to Florida Medicaid claims data, there has been a notable improvement in the share of schizophrenic patients that receive antipsychotic medications: 63.2 percent in 2001 as compared to 53.2 percent in 1996. There have been few improvements in other areas of care. However, because the continuous supply and dosing measures are measured conditionally on receiving an antipsychotic drug, this increase means that more people are receiving quality care across each dimension of care. 10 8 6 4 2 1996 1997 Any antipsychotic Continuous supply 1998 1999 Appropriate dose Continuous contact 2001 Data source: Florida Medicaid 64 National Center for Children in Poverty

Section 6 Quality of Life Measures Regular trend data is not available for many measures that might describe the quality of life for Americans living with mental illness. Due to the lack of longitudinal studies focusing on individuals with mental health, we rely on government records and apply reasoned assumptions to data on the general population to determine the likely financial and social health of these Americans. Overtime, payments from SSI and SSDI for mental health disability have increased. This available income, however, has failed to keep pace with rising costs, particularly in the housing market. Basic housing remains unaffordable to many with serious and persistent mental illness. Not surprisingly, rates of homelessness have increased over the study period, as have incarceration rates. The overall picture from the data is one of decaying financial and social status for many living with mental illness. Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 65

Income The income of people with mental illness has remained relatively stable since 1994. Trends largely reflect economywide income distribution changes. The vast majority of people with mental health problems have an income of below $20,000 per year. Data source: NSDUH Income distribution of people with a mental health problem $0-19,999 $20,000-39,999 $40,000-74,999 10 8 6 4 2 $75,000+ 1994 1995 1996 1997 2001 2002 No data for 1998, 1999, and 2000. Since 1996, payments to individuals with a mental health diagnosis have increased, both in total number and as a percentage of all SSI payments. In fact, the number of Americans receiving payments due to a mental health diagnosis have nearly doubled to just over two million since. From 1998, the share of SSI due to mental health diagnosis increased from 27 percent to 40 percent. Recipients of SSI payments due to mental health diagnosis (excluding mental retardation) and as a share of all SSI recipients 2.5M 2.0M 1.5M 1.0M 0.5M 0.0M Number % share '08 '09 5 4 3 2 1 Data source: SSI Annual Report 2009 66 National Center for Children in Poverty

Income Social Security disability insurance (SSDI) is a payroll tax-funded federal insurance program. People with a mental health diagnosis can be eligible. Since 1996, SSDI payments to individuals with a mental health diagnosis have increased in total number but remained stable as a percentage of all active beneficiaries. Recipients of SSDI payments due to mental health diagnosis (excluding mental retardation) and as a share of all active beneficiaries 2.5M 2.0M 1.5M 1.0M 0.5M Number % share 5 4 3 2 1 Data source: SSDI Annual Report 2009 0.0M '08 '09 Since 1998, the affordability of basic housing has decreased significantly. In 1998, 69 percent of SSI payments were needed to rent a one-bedroom housing unit, on average across the United States. Since 2000, a SSI beneficiary could no longer afford a onebedroom unit: the national average housing price reached 113 percent of SSI payments in. Given the low income of many Americans with a mental health diagnosis, price is a major barrier to an independent housing arrangement. Percentage of SSI benefits needed to rent a one-bedroom housing unit, national average 12 10 8 6 4 2 1998 2000 2002 Data source: Priced Out: Technical Assistance Collaborative 1998- Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 67

Housing In, approximately 750,000 were homeless. Roughly 62 percent of these were single adults, and approximately 30 percent of this group suffered from Serious and Persistent Mental Illness (SPMI). Number of homeless single adults with SPMI 150,000 120,000 90,000 The number of homeless adults suffering from mental illness increased significantly between 1987 and 1996 but has remained stable since then, with close to 140,000 people in. 60,000 30,000 0 1987 1996 In, there was an estimated 643,067 homeless people nationwide (in point-in-time estimates). Among those, 63 percent were sheltered (403,308 people). Percentage and number of people with severe mental illness among sheltered homeless 120,000 100,000 Number Percentage 3 25% Among sheltered homeless people, from to 2009, about one-quarter were those with severe mental illness, and the prevalance has been stable. 80,000 60,000 40,000 2 1 20,000 5% Data source: HUD Annual Homelessness Assessment 0 2009 68 National Center for Children in Poverty

Incarceration In, nearly 1.5 million people were incarcerated, the vast majority in state facilities. Approximately seven percent of prisoners have some form of mental illness. As incarceration rates have increased, so have the number of prisoners with mental illness. In, nearly 105,000 Americans with serious and persistent mental illness (SPMI) were in jail or prison. Prisoners with SPMI under state or federal jurisdiction at year end 120,000 100,000 80,000 60,000 40,000 20,000 0 Total State '94 '95 Federal Data source: Bureau of Justice Statistics National Prisoner Statistics, Mental Health Chartbook: Tracking the Well-being of People with Mental Health Challenges 69