Young Adults With Serious Mental Illness: Some States and Federal Agencies Are Taking Steps to Address Their Transition Challenges
Published: 2008-06-23T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: The transition to adulthood can be difficult for young adults who suffer from a serious mental illness, such as schizophrenia or bipolar disorder. When these individuals are unsuccessful, the result can be economic hardship, social isolation, and in some cases suicide, all of which can pose substantial costs to society. Due to concerns about young adults with serious mental illness transitioning into adulthood, GAO was asked to provide information on (1) the number of these young adults and their demographic characteristics, (2) the challenges they face, (3) how selected states assist them, and (4) how the federal government supports states in serving these young adults and coordinates programs that can assist them. To do this work, GAO analyzed data based on national surveys, including the National Comorbidity Survey Replication (NCS-R), and administrative data from the Social Security Administration (SSA). GAO also reviewed published research; interviewed federal, state, and local officials, as well as mental health providers, experts, and advocacy groups; and conducted site visits in Connecticut, Maryland, Massachusetts, and Mississippi --four states that focus on this population. GAO did not make any recommendations. HHS made comments intended to clarify the report and we made changes as appropriate.
section_title: What GAO Found
paragraphs: GAO estimates that at least 2.4 million young adults aged 18 through 26--or 6.5 percent of the non-institutionalized young adults in that age range-- had a serious mental illness in 2006, and they had lower levels of education on average than other young adults. The actual number is likely to be higher than 2.4 million because homeless, institutionalized, and incarcerated persons were not included in this estimate--groups with potentially high rates of mental illness. Among those with serious mental illness, nearly 90 percent had more than one mental disorder, and they had significantly lower rates of high school graduation and postsecondary education. GAO also found that about 186,000 young adults received SSA disability benefits in 2006 because of a mental illness that prevented them from engaging in substantial, gainful activity. Young adults with serious mental illness can have difficulty finding services that aid in the transition to adulthood, according to researchers, public officials, and mental health advocates. Because available mental health, employment, and housing services are not always suited for young adults with mental illness, these individuals may not opt to receive these services. They also can find it difficult to qualify for adult programs that provide or pay for mental health services, disrupting the continuity of their treatment. Finally, navigating multiple discrete programs that address varied needs can be particularly challenging for them and their families. The four states GAO visited help young adults with serious mental illness transition into adulthood by offering programs that provide multidimensional services intended to be age and developmentally appropriate. These programs integrate mental health treatment with employment and other supports. To deliver these services, states use various strategies. They coordinate across multiple state agencies, leverage federal and state funding sources, and involve young adults and their families in developing policies and aligning supports. The needs of young adults with serious mental illness have also received attention from the federal government, and agencies have been providing some support to states through demonstrations, technical assistance, and research. Federal agencies have also established bodies to coordinate programs to serve those with mental health needs, youth with disabilities, and youth in transition, which may help improve service delivery for young adults with serious mental illness, as well.

section_title: Letter
paragraphs: The transition from adolescence to adulthood is a challenging time in  The transition from adolescence to adulthood is a challenging time in  which individuals assume greater responsibility for their independence  which individuals assume greater responsibility for their independence  and make critical decisions about relationships and careers that affect  and make critical decisions about relationships and careers that affect  them long into the future. While this transition can be difficult for all  them long into the future. While this transition can be difficult for all  young adults, it is particularly so for those who suffer from a serious  young adults, it is particularly so for those who suffer from a serious  mental illness, such as acute schizophrenia or acute bipolar disorder. The  mental illness, such as acute schizophrenia or acute bipolar disorder. The  interpersonal skills and sound judgment most needed during young  interpersonal skills and sound judgment most needed during young  adulthood are precisely those skills that can be impaired by a serious  adulthood are precisely those skills that can be impaired by a serious  mental illness. Moreover, the severity of mental illness can vary over time,  mental illness. Moreover, the severity of mental illness can vary over time,  and experiencing severe episodes during this transition period can derail  and experiencing severe episodes during this transition period can derail  young adults from completing school or beginning a career. When young  young adults from completing school or beginning a career. When young  people with serious mental illness do not successfully transition to  people with serious mental illness do not successfully transition to  adulthood, the result can be economic hardship, social isolation, and in  adulthood, the result can be economic hardship, social isolation, and in  some cases suicide, all of which can pose substantial costs to society.  some cases suicide, all of which can pose substantial costs to society.
While public mental health services are primarily administered by states, a  While public mental health services are primarily administered by states, a  variety of federal programs can assist young adults with serious mental  variety of federal programs can assist young adults with serious mental  illness as they transition to adulthood. Because of concerns about young  illness as they transition to adulthood. Because of concerns about young  adults with serious mental illness transitioning into adulthood, you asked  adults with serious mental illness transitioning into adulthood, you asked  us to provide information on (1) the number of young adults with serious  us to provide information on (1) the number of young adults with serious  mental illness and their demographic characteristics, (2) the challenges  mental illness and their demographic characteristics, (2) the challenges  they face, (3) how selected states assist these young adults, and (4) how  they face, (3) how selected states assist these young adults, and (4) how  the federal government supports states in serving these young adults and  the federal government supports states in serving these young adults and  coordinates federal programs that can assist them.  coordinates federal programs that can assist them.
To provide information on the number and demographic characteristics of  young adults, which we define as individuals aged 18 through 26, with  serious mental illness, we analyzed data from two surveys of individuals  living in U.S. households: the National Comorbidity Survey Replication,  2001-2003 (NCS-R), a federally funded survey of mental illness, and the  Census Bureau’s 2006 Current Population Survey, Annual Social and  Economic Supplement (CPS). We estimated the prevalence of serious  mental illness using the NCS-R, which is based on interviews  conducted from 2001 through 2003. We then applied that prevalence  estimate to the number of young adults aged 18 to 26 nationally in 2006, as  estimated by the CPS, based on the assumption that rates of mental illness  were relatively stable in this age group between 2001 and 2006. We also  analyzed two Social Security Administration (SSA) datasets on individuals  receiving disability benefits: the 2006 Ticket Research File (TRF) and the  National Beneficiary Survey, 2004 (NBS). We assessed the reliability of  data from the NCS-R, the CPS, and SSA and determined they were  sufficiently reliable for the purposes of this report. We also reviewed  published research on the extent of mental illness among the homeless  and those involved with the criminal justice or foster care systems.
To identify the challenges faced by young adults with serious mental  illness, we reviewed published research as identified through a literature  review of relevant journals, books, articles, and reports published since  1995. We also interviewed federal, state, and local officials during site  visits to four states (see below), mental health providers, and experts in  the field of transitional young adults and mental health. Finally, we  interviewed advocacy groups, as identified throughout our review, that  work with young adults and their caregivers.
To describe how selected states are assisting young adults with serious  mental illness, we visited four states that have implemented programs  specifically focused on this population: Connecticut, Maryland,  Massachusetts, and Mississippi. During the site visits, we met with  officials from mental health agencies, other state agencies, private  organizations involved in providing or advocating for services for this  population, and, when possible, young adult consumers of mental health  services. We selected these four states for our site visits because, after  reviewing published research and interviewing federal and state officials,  mental health researchers, and advocacy groups, we determined that they  offered statewide or state-organized programs specifically focused on  transition-aged youth with serious mental illness.
To determine how federal agencies are supporting states and coordinating  federal programs that can assist young adults with serious mental illness,  we interviewed federal officials from agencies within the U.S. Department  of Education (Education), Department of Health and Human Services  (HHS), Department of Housing and Urban Development (HUD),  Department of Justice (DOJ), Department of Labor (Labor), and SSA. We  also reviewed documents pertaining to the activities and accomplishments  of interagency coordination groups as well as funding and eligibility  information on federal programs relevant to young adults with serious  mental illness. See appendix I for a more detailed description of our  methodology. We conducted our work from June 2007 through June 2008  in accordance with generally accepted government auditing standards.
subsections: section_title: Background
paragraphs: Young adulthood is a critical time in human development. During this  period, individuals transition into roles that they maintain long into the  future. This transition can involve completing school; securing full-time  employment; becoming financially independent; establishing a residence;  entering into a stable, long-term relationship; and becoming a parent. To  successfully accomplish these things, young adults must develop good  interpersonal skills, sound judgment, and a sense of personal  responsibility and purpose.
The transition from child to adult roles can be a challenging one, and  evidence suggests that this period has become longer and more complex  over the years. During the 1950s, young people often completed their  education and secured employment, married, and became parents all in  their early 20s. Since then, the economy has grown increasingly  information-driven, while wages have declined and the cost of living has  increased, when adjusted for inflation. Consequently, young adults require  greater technical skills and education to support themselves and may  alternate living in an educational setting, with their families, or  independently well into their adult years.
subsections: section_title: Mental Illness and Disability
paragraphs: As they transition to adulthood, some young people may experience a  mental illness, which is generally defined as a health condition that  changes a person’s thinking, feelings, or behavior and causes the person  distress and difficulty in functioning. Some young adults develop their  mental illness during childhood, while it is typical for others, such as  individuals with schizophrenia, to experience the onset of symptoms as  young adults.  Although research shows that 50 percent of mental  disorders begin by age 14, it can take several years for the illness to be  detected and appropriately treated. Early detection and treatment of  mental disorders can result in a substantially shorter and less disabling  course of mental illness.
The symptoms associated with a given type of mental illness can vary in  frequency and severity across individuals and for each individual over  time. Mental illnesses with particularly severe symptoms can have a  dramatic impact on an individual’s ability to function in everyday life. The  fatigue experienced by an individual with major depressive disorder can  be so severe that it is difficult to summon the energy to work every day.  The delusions associated with paranoid schizophrenia can make it  impossible to maintain stable personal relationships with spouses, co- workers, or friends. Certain other mental illnesses are known for the  unpredictable and episodic nature of their symptoms and the harmful  effect this has on the ability to function consistently over time. For  example, individuals with bipolar disorder can alternate between periods  of mania, relative normalcy, and profound depression. For a young adult,  such unpredictable mood swings can stymie progress in securing and  maintaining a job or beginning and sustaining a long-term relationship.
Individuals with mental illnesses who have particularly severe symptoms  can qualify for certain federal supports. The Alcohol, Drug Abuse, and  Mental Health Administration Reorganization Act of 1992 uses the term  serious mental illness to identify individuals whom states are allowed to  treat using federal dollars from the Community Mental Health Block Grant  program. In response to the requirements of this Act that HHS develop a  definition, SAMHSA defined “adults with a serious mental illness” as those  who are: “age 18 and over, who currently or at any time during the past  year, have had a diagnosable mental, behavioral, or emotional disorder of  sufficient duration to meet diagnostic criteria specified within DSM-III-R,  that has resulted in functional impairment which substantially interferes  with or limits one or more major life activities.”  These major life activities  can be basic living skills, such as eating or bathing; instrumental living  skills, such as maintaining a household; or functioning in social, family, or  vocational/educational contexts. States are free to establish more  restrictive eligibility guidelines for their treatment population in several  ways: by narrowing the list of qualifying diagnoses, specifying the length of  time the individual must have had symptoms, or requiring that individuals  function below a certain level. As a result, the criteria used by states to  qualify adults for public mental health services can vary.
Some individuals with a serious mental illness may be unable to work  because of their impairments. These individuals aged 18 or older may  qualify for Supplemental Security Income (SSI) or Disability Insurance  (DI) provided by SSA if they can demonstrate that their mental illness  results in the inability to engage in any kind of substantial gainful activity  and has lasted or can be expected to last at least 12 months. DI pays  benefits related to prior earnings to those with a work history sufficient to  obtain insured status. Children can receive DI benefits based on their  parent’s work history. SSI provides cash benefits for those who have  limited or no work history and whose income and assets fall below certain  levels. Children can receive SSI benefits if they have a qualifying disability  themselves. Individuals may receive concurrent payments from both DI  and SSI if their work history qualified them to receive DI payments but  their income and assets—including the amount of their DI payments— were sufficiently low that they also qualified to receive SSI payments. In  fiscal year 2006, approximately 8.6 million individuals received DI  payments and 6.9 million received SSI payments, for a total of $126.4  billion in benefits paid out over the course of the year.
section_title: Public Mental Health System
paragraphs: Many people with serious mental illness receive treatment through the  public mental health system, which serves as a safety net for those who  are poor or uninsured or whose private insurance benefits run out in the  course of their illness. State mental health departments have primary  responsibility for administering the public mental health system. In doing  so, they serve multiple roles, including purchaser, regulator, manager, and,  at times, provider of mental health services. Services are delivered by  state-operated or county-operated facilities, nonprofit organizations, and  other private providers. The sources and amounts of the public funds that  mental health departments administer vary from state to state but usually  include state general revenues and funds from Medicaid and other federal  programs.
The services provided by the public mental health system to individuals  with serious mental illness have changed over time. Historically, state-run  public mental health hospitals were the principal treatment option  available to them. By the 1960s the reliance on inpatient care was viewed  as ineffective and inadequate because of patient overcrowding, staff  shortages, and other factors. At the same time, improved medications  were reducing some of the symptoms of mental illness and increasing the  potential for more individuals to live successfully in the community. A  recovery-oriented, community-based approach to mental health treatment  has since emerged. Under this approach, individuals are to receive  services and supports uniquely designed to help them manage their mental  illness and to maximize their potential to live independently in the  community. These services and supports are to be multidimensional— intended to address not only mental illness but also employment, housing,  and other issues. When feasible, these multidimensional services are  provided in what is referred to as a “wrap-around” manner—that is, they  are uniquely targeted to the nature and extent of each individual’s needs.  When services are provided by multiple agencies, those agencies are to  coordinate their activities and funding so that the individual experiences  the services and supports seamlessly—as if from one system, not many.
section_title: Federal Programs That Can Assist Young Adults with Serious Mental Illness
paragraphs: Services and supports relevant to young adults with serious mental illness  that are funded or provided by federal programs include mental health  treatment, education and employment assistance, housing, and income  support. In all, the Judge David L. Bazelon Center for Mental Health Law   (Bazelon) identified 57 relevant programs in 2005. (See app. II.) These  programs are administered by a variety of agencies, including DOJ, HHS,  Education, HUD, Labor, SSA, and U.S. Department of Agriculture (USDA).
subsections: section_title: Programs Funding Mental Health Services
paragraphs: The federal government funds mental health services that are provided by  programs administered by state agencies. Table 1 lists five examples of  such programs.
In particular, Medicaid and the Community Mental Health Block Grants  are major sources of federal funding for mental health services for young  adults with serious mental illness. Medicaid is a health insurance program  for certain groups of low-income individuals, including elderly and  disabled individuals and children. Funded jointly by the federal  government and the states, and administered federally by the Centers for  Medicare & Medicaid Services (CMS), Medicaid is the primary federal  payer for public mental health services provided by states. In order to  receive federal Medicaid funding, states are required to provide certain  broad categories of services, such as inpatient and outpatient hospital  services and physician care. Reflecting their medical focus, Medicaid  mental health services have traditionally been provided by physicians,  including psychiatrists, who work at hospitals, clinics, and other  institutions. While Medicaid will cover services provided to individuals in  facilities with 16 or fewer beds, the program specifically excludes  coverage provided in large state-run psychiatric institutions for adults  aged 22 through 64. States may choose to provide certain optional  categories of services. For example, states may use the Medicaid  “rehabilitation option” to cover a broad range of services related to  rehabilitation from a mental illness or other condition or disability. States  may also participate in certain Medicaid demonstration programs that  allow them greater flexibility in the services they choose to cover.  Medicaid spending by the federal government and the states totaled $317  billion in 2006.
To supplement the Medicaid program, CMS administers several smaller  grant programs that states can use to fund improvements to their mental  health systems. For example, CMS established Medicaid Infrastructure  Grants to support state efforts to enhance employment options for people  with serious mental illness and other disabilities. States may use these  grants to plan and manage improvements to Medicaid eligibility  determination and service delivery systems or to improve coordination  between the state Medicaid program and employment-related service  agencies. Nearly $43 million was available to states under this grant  program in fiscal year 2008. CMS also administers Real Choice Systems  Change Grants to help states and others build the infrastructure that will  result in improvements in community-integrated services and long-term  care supports for individuals with long-term illnesses and disabilities, such  as serious mental illness. The goal of the program is to help these  individuals live in the most integrated community setting suited to their  needs, have meaningful choices about their living arrangements, and  exercise more control over their services. Nearly $14 million was awarded  to states under this grant program in fiscal year 2007.
Through the Community Mental Health Services Block Grant program and  other federal grant programs, SAMHSA funds mental health services that  can be used by states to assist young adults with serious mental illness.  The block grants are allocated to states according to a statutory formula  that takes into account each state’s taxable resources, personal income,  population, and service costs. In order to receive the funding, states are  required by SAMHSA to provide data on the mental health services  provided including demographic information annually to SAMHSA on the  number of individuals treated by the state’s mental health system. In  addition, states are required to maintain statewide planning councils that  include consumers, family members, and mental health providers to  oversee the mental health system. In fiscal year 2007, SAMHSA provided  $401 million in block grants to states. According to a SAMHSA official, this  made up an average of between 1 percent and 2 percent of each state’s  budget on community-based mental health services. SAMHSA also  administers smaller targeted grants to support state mental health services  and initiatives.
Part of SAMHSA’s activities related to the block grant program are to  promote specific practices—known as evidence-based practices—in  mental health treatment. SAMHSA considers a practice evidence-based if it  has been validated by research, such as clinical trials with experimental  designs, and if it reflects expert opinion. On its Web site, SAMHSA  provides toolkits for five types of evidence-based practices that states can  use to design their programs. These five practices are Illness Management  and Recovery, Assertive Community Treatment, Supported Employment,  Family Psychoeducation, and Co-Occurring Disorders: Integrated Dual  Disorders Treatment. (See app. III for details about these practices.)  SAMHSA is also promoting research on evidence-based practices in a  number of other areas, including supported education, and plans on  providing toolkits or other informational materials for these as well. A  condition for receiving Community Mental Health Services Block Grant  funds is that states are required by SAMHSA to report on whether they are  using the evidence-based practices. In addition, states can use Medicaid  funds to pay for certain services associated with the use of evidence-based  practices.
section_title: Education and Employment- Related Programs
paragraphs: Other federal programs fund educational and employment-related  supports through states, localities, or other groups to individuals with a  mental health disability. (See table 2.)
Through special education programs funded with federal dollars in part,  students through age 21 with emotional disturbances and students with  other disabilities with behavioral and emotional components can receive  an individually tailored program of specialized instruction and support  services set out in an individualized education program (IEP).  On the  basis of decisions of the student's IEP team, students can receive such  services as psychological services, counseling and social work services,  and job coaching (as part of services supporting the transition of a student  to post-school activities).
Another example of a program that provides educational and employment- related supports is Labor’s WIA Youth Activities program, which funds  efforts related to workforce training, education attainment, community  involvement, and leadership development for low-income individuals aged  14 to 21 who have difficulty completing their education or securing or  maintaining employment. Once they are determined to be WIA eligible,  youth receive an assessment of their academic level, skills, and service  needs. Local youth programs then use the assessment to create  individualized service strategies, which lay out employment goals,  educational objectives, and necessary services. In 2006, Labor received  approximately $940 million in funding appropriated for WIA youth-related  activities.
Education’s Rehabilitation Services Administration provides grants to  assist state vocational rehabilitation agencies in providing employment- related services for individuals with disabilities, including individuals with  serious mental illness. Vocational rehabilitation agencies assist individuals  in pursuing gainful employment commensurate with their abilities and  capabilities. Money for vocational rehabilitation is allotted to states and  territories according to a formula, and over $2.8 billion was appropriated  to states in 2007.
Finally, current and former foster care youth can receive services up to the  age of 21 through the Chafee Foster Care Independence program. This  program funds independent living, education, and training and gives states  the flexibility to extend Medicaid coverage for former foster care youth up  to age 21. Federal funding associated with these activities totaled $140  million in 2006. However, we have found that there are critical gaps in  mental health and housing services for foster youth and that states were  serving less than half of their eligible foster care population through their  programs.
section_title: Programs That Provide Housing Supports
paragraphs: Other programs provide housing supports. (See table 3.) These programs  range in scope, targeting low-income people generally to vulnerable  groups specifically, such as the disabled or the homeless.
section_title: More Than 2 Million Young Adults Have a Serious Mental Illness That Can Affect Their Education and Employment
paragraphs: We estimate that at least 2.4 million young adults had a serious mental  illness in 2006. This estimate is likely to be low because it is based on a  survey that did not include individuals who were homeless,  institutionalized, or incarcerated—populations that likely suffer high rates  of mental illness. Most young adults with serious mental illness suffer from  multiple disorders, and relative to young adults with no mental illness,  they have significantly lower rates of high school graduation and  postsecondary education. Our analysis also found that about 186,000  young adults received disability benefits from SSA in 2006 because their  mental illness was so severe that they were found to be unable to engage  in substantial gainful activity. Finally, although we were unable to identify  the number of young adults with serious mental illness who were  homeless or involved in the justice or foster care systems, research  suggests that these groups have high rates of mental illness overall.
subsections: section_title: At Least 2.4 Million Young Adults Had a Serious Mental Illness in 2006, and Many Suffered from Multiple Disorders and Did Not Graduate from High School
paragraphs: According to our analysis of the NCS-R, an estimated 2.4 million young  adults aged 18 through 26 had a serious mental illness in 2006— approximately 6.5 percent of the estimated 37 million young adults living  in U.S. households. We estimate that another   9.3 million—25.3 percent—had a moderate or mild mental illness, and that  overall, nearly one in three young adults experienced some degree of  mental illness in 2006. (See fig. 1.)
Because of limitations in the populations surveyed by the NCS-R, our  estimated prevalence of serious mental illness among young adults in 2006  is likely to be low. Because only individuals living in households and  campus housing were included in the sample population, individuals who  were institutionalized, incarcerated, or homeless are not included in NCS- R data. Research has shown that young adults in these populations may  have significant rates of serious mental illness. The NCS-R may also under- represent the prevalence of serious mental illness because some  individuals may not have reported what they believe will be viewed as  socially unacceptable behaviors or may have chosen not to participate in  the survey at all.  Finally, the NCS-R does not attempt to measure the  prevalence of schizophrenia and other nonaffective psychotic disorders,  and for this reason, may only represent a subset of those who would be  considered by SAMHSA to meet the criteria for having a serious mental  illness.
Our analysis of the NCS-R indicates that certain disorders were most  common among the young adult population aged 18 through 26 with  serious mental illness. Specifically, we found that six mental disorders  affected more than 25 percent of young adults with serious mental illness.  The most prevalent of these was intermittent explosive disorder, and the  other five were major depressive disorder, specific phobia, bipolar  disorder, alcohol abuse, and social phobia. (See table 4.) We also found  that nearly all young adults with serious mental illness were diagnosed  with more than one mental disorder. Specifically, 89 percent had two or  more diagnoses and 56 percent had four or more. For example, 20  percent of individuals with the most common diagnosis, intermittent  explosive disorder, were also diagnosed with bipolar disorder, while 39  percent were also diagnosed with alcohol abuse. Results of the survey also  suggest that about 32 percent of young adults with a serious mental illness  had a co-occurring diagnosis of alcohol or drug abuse or dependence  along with at least one other mental disorder.
Young adults with serious mental illness had significantly lower rates of  high school graduation than other young adults, according to our analysis  of demographic information in the NCS-R. Specifically, the percentage of  young adult respondents with serious mental illness who graduated high  school was significantly lower than the percentage of those with  moderate, mild, or no mental illnesses. Additionally, the percentage of  young adult respondents with serious mental illness who continued their  education after high school was also significantly lower than the  percentage of those with moderate, mild, or no mental illness. (See   figure 2.)
Young adults with serious mental illness also had lower rates of  employment than other young adults, although the differences were not  statistically significant, according to our analysis of the NCS-R.  Specifically, 63 percent of young adults with serious mental illness  reported they were currently employed, versus 68 percent of those with a  mild or moderate mental illness and 71 percent of those with no mental  illness. Results of other studies, however, suggest that unemployment is a  common problem for young adults with serious mental illness. For  example, an analysis of the 1994--95 National Health Interview Survey on  Disability found an employment rate of 34 percent among working-age  adults with mental health disabilities, versus 79 percent among adults with  no disability. In addition, the President’s New Freedom Commission on  Mental Health stated in its 2003 report that only one in three persons with  a disability resulting from mental illness is employed. (See app. IV for  more detailed demographics of young adults with serious mental illness  compared to those with moderate, mild, or no mental illness.)
section_title: About 186,000 Young Adults Had a Mental Illness So Severe That They Received Disability Benefits from the SSA in 2006
paragraphs: In 2006, about 186,000 young adults had a mental illness that was severe  enough that they received disability payments from SSI, DI or both,  meaning that they were found to be unable to engage in substantial,  gainful activity because of their illness, according to our analysis of the  TRF. The 186,000 individuals who received benefits in 2006 represented  just under a quarter of all young adults who received SSI or DI that year  and do not include individuals who receive benefits because of  abnormalities in cognition or intellectual functioning, such as mental  retardation or autism. Of these young adults, about 67 percent received  payments through SSI only, nearly 9 percent received payments from DI  only, and 24 percent received concurrent payments from both programs.  Among those receiving SSI payments, nearly 60 percent first became  eligible before the age of 18.
The mental illnesses that were most common among young adults  receiving payments from SSI, DI, or both for serious mental illness include  schizophrenic, paranoid, and other functional psychotic disorders and  affective mood disorders, such as depression or bipolar disorder. (See  table 5.)
These young adults receiving SSI or DI or both scored lower on certain  socioeconomic indicators than the general population of those with  serious mental illness. Specifically, when we compared SSI and DI  recipients with serious mental illness with their counterparts from the  NCS-R, we found that the SSI and DI recipients had lower rates of high  school graduation and employment. (See table 6.) In addition, while 59  percent of those receiving disability payments reported having ever  worked, only 15 percent reported being currently employed. This  compares with an estimated 63 percent rate of employment for those in  the NCS-R. Finally, we found that SSI/DI recipients also had a lower  average annual household income than all young adults with serious  mental illness represented in the NCS-R. (See app. V for more detailed  demographic analysis of young adults enrolled in SSI and DI due to serious  mental illness.)
The number of young adults whose mental illness is severe enough to  qualify for SSI or DI is likely to be higher than the 186,000 who were  receiving disability payments in 2006 for two reasons. First, there could be  some number of individuals who suffer from a serious mental illness who  do not apply for SSI or DI or complete the application process. The  process of proving eligibility requires the submission of medical records to  document the medical nature of the mental illness, probable duration of  the symptoms, and the degree of impairment the illness imposes, as well  as proof of income for SSI eligibility—a process that might prove too  difficult for those with a serious mental illness. The second reason the  186,000 might not represent all who could qualify for disability benefits is  that, according to SSA officials, some individuals who have a serious  mental illness may be receiving benefits because of another disability,  such as mental retardation, or a physical disability. Our analysis of SSA  administrative data found about 100,000 young adults whose primary  disability was not a serious mental illness had a secondary diagnosis of a  mental illness, which may have been severe enough, by itself, to qualify the  individual for disability benefits. These individuals were therefore not  included in our count of 186,000.
section_title: The Number of Young Adults with Serious Mental Illness Who Are Homeless or Involved in the Justice or Foster Care Systems is Unknown, Although Research Suggests Their Rates of Mental Illness May Be High
paragraphs: We were not able to estimate the number of young adults in certain  vulnerable populations who have a serious mental illness, although the  available research suggests that rates of mental illness are high in these  groups. These vulnerable populations include young adults transitioning  out of the foster care system—who may have limited family support for  their struggle with serious mental illness—and young adults who become  homeless or incarcerated. The NCS-R does not include individuals who are  homeless or incarcerated, and although individuals in foster care are  included, they are not specifically identified as such in the data.  Additionally, a review of literature on homelessness and the justice and  foster care systems yielded no studies that produced national estimates of  the number of such young adults in those groups. Studies that examine  mental illness in those groups either do not yield estimates specific to  young adults or do not measure serious mental illness in a consistent way  that can be compared across groups.
Although the prevalence of serious mental illness has not been studied in  these young adult populations nationally, available research suggests that  their rates of mental illness may be high. With respect to young adults in  foster care, a national survey that included 464 individuals aged 12 to 17  who had been placed in foster care found that they were about four times  more likely to have attempted suicide in the preceding year when  compared to those never placed in foster care. In addition, they were  about three times more likely to have experienced significant anxiety and  mood symptoms, such as depression or mania. Research also indicates  that mental health problems among foster care children may persist into  adulthood. For example, the Northwest Foster Care Alumni Study, which  assessed 659 adults aged 20 through 33 in Oregon and Washington who  had been in foster care as children, found that over half had experienced  symptoms of one or more mental disorders in the previous year, and 20  percent had symptoms of three or more mental disorders. The study  compared these results to results from the NCS-R for adults in the same  age range, which found that only three percent of adults in that age range  had symptoms of 3 or more disorders in the previous year.
Studies also suggest high rates of mental illness among young adults who  are homeless. For example, an Urban Institute study based on the National  Survey of Homeless Assistance Providers and Clients estimated that 46  percent of homeless individuals aged 20 through 24 had experienced a  mental health problem in the prior year. Another study of 432 homeless  young people in Los Angeles found that 63 percent of those aged 19  through 24 currently had depressive symptoms and 38 percent had  attempted suicide at some point in their lives.
Finally, studies have found that young adults involved in the criminal  justice system have high rates of mental illness. According to two national  surveys conducted by the Bureau of Justice Statistics, 62.6 percent of  young adults aged 24 or younger in state prisons had a mental health  problem in 2004, and 70.3 percent of those in local jails had a mental  health problem in 2002. Further, a multi-state survey funded by DOJ’s  Office of Juvenile Justice and Delinquency Prevention found that about 70  percent of youth involved with the juvenile justice system had at least one  mental health disorder, and 27 percent had a severe mental health disorder  in 2006.
section_title: Young Adults with Serious Mental Illness Face Challenges Accessing Appropriate Support
paragraphs: According to researchers, public officials, and advocates, young adults  with serious mental illness can have difficulty finding services tailored to  their needs, qualifying for adult programs, and navigating multiple  programs and delivery systems. While these young adults need a range of  support services, the existing public mental health, employment, and  housing programs are not necessarily tailored to their disability or their  stage of life, which may lead them to forgo services entirely. Further,  young adults who received free or low-cost mental health services as  children generally face different, and sometimes more stringent, eligibility  requirements as adults. Finally, federal officials and researchers have  recognized the difficulties this group and their families have in navigating  the broad array of programs that can help meet their needs.
subsections: section_title: Public Services Are Often Not Tailored to the Needs of Young Adults with Serious Mental Illness
paragraphs: Although appropriate mental health services are a key to achieving  independence, researchers and officials told us that these services are  often not tailored to the age-related needs of the young adult population.  We have previously reported that directors of programs serving youth  aged 14 through 24 have difficulty finding adequate age-appropriate mental  health services for their clients. A national expert has noted that adult  mental health service providers in one state, for example, were generally  not trained in adolescent development and so were unprepared to treat  young adults with serious mental illness who tend to be relatively  psychosocially immature. Officials in three of the states we visited  similarly reported a need for better training among mental health  providers in issues related to young adults. Other researchers have noted  that group therapy should involve members in the same age range, given  that young adults’ self-esteem can depend significantly on peer  acceptance. However, young adults are often referred to group-oriented  treatment that may include mainly older adults who do not share their  transition-age issues and is therefore often inappropriate for them,  according to mental health advocates with whom we spoke.
While young adults with serious mental illness can benefit from a variety  of employment programs, these programs are also not necessarily tailored  to the particular needs of this population. For example, state officials in  three of the four states we visited told us that WIA Youth centers in those  states often lack the expertise to help young adults with serious mental  illness find appropriate employment because these centers generally do  not have the capacity to provide the intensive and customized support  these individuals need. Labor officials told us that, as a result, WIA staff  often refer youth they believe have mental illness to vocational  rehabilitation programs. However, according to federal officials,  vocational rehabilitation programs have been traditionally used by those  with physical disabilities and are also not always designed to meet mental  health needs. Advocates working with young adults in most states we  visited likewise noted that the vocational rehabilitation services available  to the youth they work with have not been responsive to their mental  health-related issues. Similarly, officials in one state noted that service  providers for students with disabilities at colleges and universities often  lack the expertise and training to support students with serious mental  illness.
Finally, while researchers noted that young adults with serious mental  illnesses experience difficulty living independently and in some cases  finding housing, officials in all of the states we visited cited the inability to  find appropriate housing as a key problem for this population. Specifically,  they noted that there are not enough permanent housing options that are  targeted to this age group. Supportive housing-–which often includes a  comprehensive set of supports such as job training and mental health  services-–is recommended by SAMHSA as a resource for those with  mental illness. However, officials in all states we visited said there was a  lack of such housing available. Additionally, where supportive housing is  available, it is not necessarily geared to young adults. For example, HUD  officials reported that the median age of the head of households receiving  HUD supportive housing is 47. One service provider explained that if  housing options are not geared to their age group, young adults with  serious mental illness may end up homeless.
Researchers and advocates have noted that if services are not suited to  their age or disability, young adults with serious mental illness may choose  not to participate. Young adults are particularly sensitive to the stigma  associated with receiving treatment for their symptoms, and SAMHSA has  reported that they have the lowest “help-seeking behavior” of any age  group. Furthermore, as they age into the adult mental health system, their  parents are generally no longer responsible for their mental health  treatment, and these young adults then have the option to decline  treatment. In Massachusetts, for example, a state official found that, in one  locality, more than half of the young adults who had received mental  health services as children chose not to receive them as adults. She  attributed this to a lack of services geared to their disability and age.
section_title: Differences in Eligibility Criteria between Child and Adult Systems Pose Challenges
paragraphs: Researchers and state officials we spoke with noted that young adults who  once received public mental health services, Medicaid, or SSI or DI as  children face different and sometimes more restrictive eligibility  requirements for these programs as adults. They added that ineligibility for  these adult programs can end established relationships with mental health  professionals or otherwise disrupt receipt of mental health services.
Qualifying for free or low-cost mental health services is often more  difficult for adults than children. The National Conference of State  Legislatures found that, among state programs, the clinical criteria for  receiving adult public mental health services are generally narrower for  adults than for children. Another study has found that in 2001 adult and  child mental health policies were different in 34 states, and in 31 of those  states, the range of qualifying disorders was more limited for adults than  for children. Specifically, in half of the states with different criteria, the  adult requirement was more restrictive by virtue of citing fewer specific  diagnoses to qualify. Similarly, in most states children can qualify for  Medicaid---the major federal funder of public mental health services---at  higher household income levels than adults, who must also meet other  categorical eligibility criteria. In these states, a young person previously  covered by Medicaid as a child who becomes an adult risks losing access  to the mental health treatment and psychiatric rehabilitation services  covered by the program. Advocates, state officials, and researchers all  cited the loss of Medicaid benefits because of different eligibility  requirements between children and adults as a challenge for young adults  with serious mental illness.
When youth receiving SSI are evaluated using adult rules for SSI within  one year of turning age 18, as required by law, they also find that the adult  eligibility criteria are different and can result in a cessation of payments.  This can also lead to a loss of Medicaid eligibility. SSA officials told us that  25 percent of youth who received SSI because of a mental health--related  condition do not qualify for SSI once they turn 18. Advocates working with  these young adults and their families in the states we visited cited this loss  of SSI benefits as a key concern for young adults with serious mental  illness in their transition to adulthood. SSA officials indicated that the loss  of benefits for these young adults resulted partly from the fact that certain  mental disorders that are considered disabling to children are not  applicable to adults. For example, adult disorders that qualify for SSI do  not include eating disorders and attention deficit hyperactivity disorder.  However, SSA officials told us that they are currently working on revising  some of the criteria for mental health impairments so that the criteria for  children and adults are more closely aligned.
section_title: Navigating Multiple Programs and Systems Can also Present Challenges
paragraphs: Because young adults with serious mental illness usually have a number of  needs requiring multiple supports, they can find it difficult to receive all  the services they need when programs are administered by different  agencies with varying eligibility requirements. Given their multiple needs,  a coordinated set of benefits is important for a successful transition to  adulthood. Labor recently reported, however, that there is no single  system that guides youth, in general, through the process of becoming  productive, self-sufficient adults and that existing services for them are  uncoordinated. Bazelon has similarly found that the programs serving  young adults with mental illness have varying age and income  requirements and may use different definitions of mental illness, which  can make it difficult to obtain multiple services. In addition, according to  state officials with whom we visited, program staff may not collaborate  with or notify one another of the service plans they develop for clients.  For example, the director of a mental health advocacy organization in  Massachusetts told us that when a young person has a serious mental  illness and the secondary school is involved, the staff at the school will  typically not speak with the young person’s doctor or Medicaid provider in  order to coordinate behavior plans or more fully understand the particular  mental illness.
Navigating the varying eligibility requirements and service plans of  multiple programs across a number of delivery systems can be difficult for  anyone, but young adults with serious mental illness may have fewer  interpersonal and emotional resources with which to do so. Mental health  advocates told us that because young adults with serious mental illness  tend to be involved in different service delivery systems, their parents or  other caring adults must often operate as their de facto case worker,  attempting to organize and coordinate various services. However,  researchers and family advocates have also found that a major challenge  for these parents and caring adults is their need for information related to  availability of supports. For example, one researcher found that families  wanted information related to the young adults’ condition and treatment,  available community resources, and supports for caregivers and that they  generally reported feeling overwhelmed by the complexity of the system of  agencies and organizations.
section_title: Selected States Provide Multidimensional Services to Young Adults with Serious Mental Illness Using Various Strategies
paragraphs: Recognizing the challenges faced by young adults with serious mental  illness, the four states we visited—Connecticut, Maryland, Massachusetts,  and Mississippi—have designed programs with multidimensional services  to help them transition into adulthood. States have used various strategies  to provide these services. They include broadening eligibility criteria for  mental health services, employing some of the evidence-based practices  promoted by SAMHSA, coordinating efforts across multiple state agencies,  leveraging federal and state funding sources, and involving consumers and  family members in developing policies and aligning services.
subsections: section_title: States We Visited Have Programs Providing Multidimensional Services to Young Adults
paragraphs: The four states we selected for review have developed programs that  provide multidimensional services to young adults with serious mental  illness. Administered by their respective mental health agencies, these  programs are implemented at the local level generally by mental health  authorities, non-profit organizations, and community-based mental health  providers. In addition to health care services, the programs provide a  range of services intended to be age and developmentally appropriate,  including vocational rehabilitation, employment, life-skills development,  and, in some cases, housing. These four states try to tailor these  services so that, to the extent possible, young adults receive services  appropriate for each individual’s transition needs. They also try to  integrate the services so that young adults do not have to navigate multiple  discrete programs. Tailoring and integrating services are both central  tenets of the wraparound approach. In Connecticut, the young adult  program initially focused on individuals referred from the Department of  Children and Families, but has since evolved to focus on a broader group  of young adults with serious mental illness. This focus is similar to that of  the other states’ programs.
The young adult programs administered by these four states vary in the  number of young adults with serious mental illness that they serve and  have not yet been systematically evaluated for their effectiveness. For  example, in state fiscal year 2007, Connecticut’s specialized program for  young adults with serious mental illness aged 18 through 25 served 716  individuals, or about 27 percent of the 2,615 young adults with serious  mental illness receiving mental health services from the state mental  health agency. State officials explained that not every young adult needs  the kinds of intensive services provided under the state’s specialized  program for young adults but added that many more young adults could  benefit from the program than are currently being served.
In 2007, Massachusetts’s young adult program served all of the  approximately 2,600 young adults aged 16 to 25 with serious mental illness  in the state’s mental health system, providing one or more services,  including case management, housing, employment, education, and peer  mentoring. A smaller number received a variety of other mental health and  social services. Although most of the states’ young adult programs have  existed for more than five years, none of the states have systematically  collected data on outcomes to evaluate the effectiveness of their  programs. State officials said that their budget resources are limited and  they have focused on providing services. (See app. VII for a description of  the four state programs.)
section_title: States We Visited Use a Number of Strategies to Provide Services
paragraphs: In the four states we visited, state officials described a variety of strategies  they have used to provide multidimensional services to young adults with  serious mental illness. The strategies include broadening eligibility criteria  for mental health services, employing evidence-based practices promoted  by SAMHSA, coordinating efforts across multiple state agencies,  leveraging federal and state funding sources, and involving consumers and  family members in developing policies and aligning services.
subsections: section_title: Broadening Eligibility Criteria for Mental Health Services
paragraphs: Maryland has chosen to broaden eligibility criteria for mental health  services for young adults beyond the medical necessity criteria established  for adults with serious mental illness. Specifically, Maryland generally  limits its comprehensive adult mental health services to individuals with  certain diagnoses and functional limitations, but state officials have  approved eligibility for young adults who do not meet all the criteria.  Maryland officials told us they aim to identify and treat individuals so that  they can become meaningful community participants rather than  becoming dependent on the service system. They said that state services  target young adults who are in or at risk of out-of-home placement, such  as in residential treatment centers. Many of these young adults have  histories of severe trauma, have limited community living skills, and have  increased psychotic symptoms.
section_title: Employing Evidenced-Based Practices
paragraphs: Another strategy is to deliver multidimensional services using evidence- based practices promoted by SAMHSA. Although these evidence-based  practices have not been empirically tested specifically on the young adult  population, states we visited are using some of them. Some of these  practices involve bringing integrated mental health and social services to  the young adults living in the community rather than expecting them to  navigate multiple discrete programs on their own. For example,  Massachusetts and Connecticut have used the Assertive Community  Treatment model, which employs an interdisciplinary team of  psychiatrists, social workers, and nurses to provide psychiatric,  rehabilitation, and other support services in the community 24 hours per  day. In this model, team members collaborate to tailor services on an  individual basis, taking into account cultural diversity. Assertive  Community Treatment services are designed for individuals who have the  most serious symptoms of mental illness and greatest impairment in  functioning. They often come to the program in crisis or upon release from  inpatient psychiatric care. In Massachusetts, the Assertive Community  Treatment services are available in various locations throughout the state,  including in three sites in the Southeastern Area that specifically target  these services for young adults. Connecticut uses this treatment model in  some of its young adult program sites, often to serve those leaving foster  care and the juvenile justice system.
Connecticut, Maryland, and Massachusetts provide another evidence- based practice—supported employment—to assist young adults with  serious mental illness. Based on the principle that work is therapeutic,  supported employment programs are designed to help individuals work in  competitive jobs in the community while receiving mental health  treatment and rehabilitation services. These programs focus on rapid job  placement in competitive employment. Once the individual is working, the  program provides supports to retain employment. In Maryland, for  example, the state mental health agency and the state vocational  rehabilitation agency approved 30 evidenced-based supported  employment programs available for young adults with serious mental  illness, although these are not uniformly distributed across the state.  According to state officials, these programs help individuals find and  maintain meaningful jobs that are consistent with the individual’s  preferences and abilities.
In addition, Connecticut has been providing a type of support that  SAMHSA is beginning to explore as a potential evidence-based practice— supported education for young adults with serious mental illness who  enroll in higher education. The Connecticut mental health agency provides  funding for a supported education counselor at one of the state  universities, who provides case management services, acts as a liaison  between the university’s disability office and the student with mental  illness, and helps students work with relevant university staff to get  appropriate accommodations for their mental illness in the classroom or  during exams.  This counselor serves also as an information resource for  the student’s parents, university faculty, and personnel that work with the  young adult, as well as local mental health authorities and other key  persons in the mental health system across the state.
section_title: Coordinating Services across State Agencies
paragraphs: Agencies in states we visited are also coordinating to develop policy and  provide multidimensional services. Agencies coordinate client referral,  eligibility determination, and service delivery. These coordination efforts  help address eligibility gaps between the children and adult mental health  systems and ease service delivery so that young adults do not have to  navigate multiple discrete programs.
Formal Referral Process across Agencies: This strategy can provide a  bridge for individuals who were receiving services and supports from one  agency as children but must transition to another agency in order to  continue to receive those services and supports as adults. In Connecticut,  many young adults are formally referred to the Connecticut mental health  agency by the state agency responsible for foster care, juvenile justice, and  youth mental health services. A cooperative agreement between the two  agencies specifies appropriate candidates for the state mental health  agency’s young adult program, the process for providing services to them  by both agencies during the transition period, and the agencies’ respective  funding responsibilities. Transitioning youth are referred as early as  possible, generally at age 16, to allow state mental health agency officials  to develop appropriate plans. These referrals are made on a monthly basis.
Integrated Eligibility Determination and Service Delivery: Maryland’s  mental health agency has a formal arrangement with the state’s vocational  rehabilitation agency to integrate eligibility determination and service  delivery processes. Under a cooperative agreement signed by the two  agencies in 2007, individuals determined eligible by the mental health  agency are also determined eligible by the vocational rehabilitation agency  for supported employment services. The two agencies have automated  their eligibility determination processes to be simultaneous. Once  approved for services, individuals receive assistance finding and keeping a  job and managing their mental illness in the workplace.  Services are  provided by not-for-profit supported employment programs that hire  employment support specialists, according to a state mental health  official.
Use of Statewide and Local Interagency Task Forces: In 2003,  Mississippi’s mental health agency created an interagency Transitional  Services Task Force to develop policies and identify resources appropriate  for young adults with serious mental illness aged 14 through 25. The task  force monitors the implementation of the state’s young adult program at  its two current sites and hopes to eventually present the results of an  evaluation to justify expansion of the program statewide. At the local level,  Mississippi established Multidisciplinary Assessment and Planning Teams,  comprised of local officials from various state agencies and advocates that  meet and review cases that include individuals aged 14 to 21 transitioning  from the child to adult mental health systems, as well as other young  adults considered high-risk. Currently operating in 33 of 82 counties in the  state, the teams coordinate delivery of various services including mental  health, education, vocational rehabilitation, and health care services.  They have some flexible funds for providing additional multidimensional  services, such as housing, tutoring, school uniforms, and in-home respite  care.
section_title: Leveraging Federal and State Funding Resources
paragraphs: Another strategy is to leverage federal and state funds to finance programs  for young adults with serious mental illness. The four states we visited use  Medicaid to pay for mental health services approved by CMS in the states’  Medicaid plans, such as those provided in a physician’s office, at an  outpatient clinic, or rehabilitation program in the community. To varying  extents, three of the four states—Maryland, Massachusetts, and  Mississippi—use Medicaid’s rehabilitation option to pay for additional  services that can support a young adult’s recovery from mental illness.   These services, which are provided to address daily problems related to  community living and interpersonal relationships, may include psychiatric   rehabilitation program services, symptom management, and counseling.  Further, some of these states have used certain CMS grants to help cover  some expenses of their young adult programs. For example, Mississippi  targeted the Real Choice Systems Change grant that it received from CMS  in 2001 to develop a “person-centered planning” approach for delivering  services to young adults with serious mental illness. The grant concluded  in 2004, but the state is using its own funds to provide these services in  two of its local mental health centers and to provide training related to this  approach. In addition, all four states we visited use their own funds to pay  for mental health and other services for individuals in their young adult  programs that are not eligible for Medicaid or who are Medicaid-eligible  but receive services not covered under Medicaid. Examples of such  services include housing and transportation costs.
In addition, states we reviewed used funds from other federal programs to  provide various transition services to eligible youth through their young  adult programs. In the case of Maryland, this involves “braided funding”  for supported employment services. Braided funding refers to the  integration of funding streams from multiple agencies so that the  individual receiving services experience a seamless array of services. For  example, various components of supported employment services are  funded by Maryland’s mental health agency, Maryland’s vocational  rehabilitation, and Medicaid. Maryland’s mental health agency and  Maryland’s vocational rehabilitation agency have a cooperative agreement  that outlines the funding components. In addition, Maryland requires  individuals in its public mental health system, including young adults, to  apply for SSI or any other applicable public benefit in order to receive  income assistance (to pay for housing and insurance) to pay for services,  according to a state mental health official. In the development of its young  adult program, Maryland also uses part of its CMS Medicaid Infrastructure  Grant to consult with experts on funding strategies and to implement the  web-based mental health and vocational rehabilitation eligibility system.
In addition to federal funds leveraged at the state level, some local state  agencies obtain services for their clients from other federally funded  programs. Officials from one service provider in Massachusetts told us  that their organization works with state housing authorities to secure  HUD’s Section 8 Rental Voucher Program for adults who were previously  homeless. When we conducted our site visit, the provider was using 10  such vouchers to serve 20 to 30 young adults, according to this provider.  State officials said that this was an important initiative by this provider  because states find it particularly difficult to obtain appropriate housing  for young adults with serious mental illness who have criminal records. In  Maryland, although the state mental health agency does not work directly  with the state WIA Office, a local provider in its young adult program  works with local WIA offices in two counties to coordinate employment  services for young adults with serious mental illness. This provider  stations case managers at these counties’ WIA One-Stop Centers to help  young adults with serious mental illness with tasks such as identifying job  opportunities or scheduling interviews.
section_title: Involving Young Adults and Their Families
paragraphs: Another strategy is to involve young adults and family members in  developing policy and delivering and evaluating services. The  Massachusetts mental health agency established a statewide Youth  Development Committee in 2002 to focus on individuals aged 16 through  25 with serious mental illness. Committee membership includes young  adults, parents, state child and adult mental health agency representatives,  transition experts, and other professionals. Co-chaired by young adults  with serious mental illness, the committee has engaged in a strategic  planning process and meets every month to discuss progress in the field.  The Committee has young adult representatives from all areas of the state,  and these representatives report on progress related to supported  employment, housing, and transition age youth case management in their  areas. They also discuss Massachusetts’s implementation of the Transition  to Independence Process (TIP) system and identify emerging staff training  needs associated with Motivational Interviewing and the TIP model.  TIP is  an approach that delivers individualized-tailored services to youth and  young adults with serious mental illness by involving them in defining and  achieving their employment, education, and community-life goals. The  state also has a Youth Leadership Academy, which young adults attend to  build peer networks and social connections and obtain information on key  topics such as substance abuse prevention and health insurance.
section_title: Federal Agencies Have Supported Demonstrations, Provided Technical Assistance and Research, and Formed Interagency Working Groups
paragraphs: The needs of young adults with serious mental illness have also received  some attention from the federal government, which has, to some extent,  supported state efforts to serve them through demonstrations, technical  assistance, and research. In response to presidential concern about  uncoordinated service delivery in the mental health and other related  systems, several federal agencies have formed working groups to consider  opportunities for collaboration among programs that involve mental  health, youth in transition, or the needs of transitional youth with  disabilities.
subsections: section_title: One Former Federal Demonstration Project Developed Transition Programs That Continue in Five States and States Can Use Other Federal Programs to Provide or Coordinate Services
paragraphs: SAMHSA, in collaboration with Education, funded local services through  the Partnerships for Youth in Transition demonstration aimed at  developing local programs and assisting young adults with serious mental  illness as they transition to adulthood. A total of $9.4 million was  awarded over 4 years to several sites in Maine, Minnesota, Pennsylvania,  Utah, and Washington. The demonstrations were intended to be self- sustaining and, although funding ended in 2006, sites in Pennsylvania, Utah  and Washington have continued the program in total and aspects of the  program continue in Minnesota and Maine. Pennsylvania, for example, has  continued to operate a program serving young adults aged 14 through 25 in  two economically disadvantaged communities. In these communities,  young adults with serious mental illness continue to be involved in  planning and implementing activities and serve on review panels and state- level advisory boards. These communities also use transition facilitators  who work with young adults to help determine their goals and how local  services can assist them.
SAMHSA officials stated that this demonstration project resulted in  positive outcomes that they would like other states to achieve. A  preliminary evaluation of 193 program participants conducted by the  National Center on Youth in Transition at the University of South Florida  suggests that there may be some positive outcomes, such as employment,  for participants from the program after 1 year. While the Partnerships for  Youth in Transition demonstration ended in 2006, SAMHSA officials  indicated they are considering continuing similar work and looking for  opportunities to use the data and lessons learned from this demonstration  to help states better serve young adults with serious mental illness.
While we found that there are currently no federal programs that target  this population, agencies fund other demonstration projects that support  state and local efforts to provide or better coordinate existing services for  transition-age individuals. For example, SSA’s Youth Transition  Demonstration funds programs at ten sites that help youth aged 14  through 25, who receive or may qualify for SSI, transition from school to  employment. SSA officials stated that mental illness is the primary  disabling condition of 23 percent of the Youth Transition Demonstration  enrollees. SSA developed alternative SSI rules only for the participants in  this program that included extending their eligibility for SSI beyond age  18, even if the recipient does not meet SSI adult eligibility criteria. While  not targeted to young adults with serious mental illness, CMS also offers a  number of Medicaid demonstration waivers or options that can help states  pay for services for this population. For example, the Community  Alternatives to Psychiatric Residential Treatment Facilities Demonstration  Grant Program has awarded 5-year grants to 10 states aimed at preventing  youth up to age 21 from entering psychiatric residential treatment  facilities. This demonstration can cover the cost of a comprehensive  package of community-based services for these youth, such as 24-hour  support and crisis intervention, respite care for families, and after-school  support programs. Additional federal programs that can be used by states  to serve young adults with serious mental illness are described earlier in  this report, as well as included in appendix VI.
section_title: Federal Agencies Provide Technical Assistance and Fund Research
paragraphs: Currently, some federal agencies provide technical assistance on  promising practices that can help states coordinate services for young  adults with serious mental illness as they transition to adulthood.
SAMHSA’s Center for Mental Health Services contracts with two nonprofit  organizations to operate the Technical Assistance Partnership for  Child and Family Mental Health. The Partnership facilitates  collaboration among government officials, organizations, and community  leaders to develop and implement systems of care. SAMHSA officials told  us the Partnership has recently begun to provide information on the  specific needs and issues pertinent to young adults with serious mental  illness and resources on child welfare youth in transition.
The National Collaborative on Workforce and Disability for Youth,  funded by Labor’s Office of Disability Employment Policy, provides  technical assistance to One-Stop Centers to increase their capacity to  serve youth aged 14 through 25 with disabilities, including those with  serious mental illness. For example, according to Labor officials, Florida  used this resource to enable its workforce development system to better  assist youth with disabilities as they transition to adulthood. Recognizing  the uncoordinated service delivery systems that youth must navigate, the  Collaborative also published a resource guide for workforce practitioners  and policy makers. The guide is designed to promote an understanding of  how to serve youth with mental health needs and provides information on  overcoming obstacles to better coordinate services across delivery  systems for young adults with serious mental illness.
With regard to federal support for research in this area, NIMH awarded a  $1.1 million grant in 2007 to four research projects examining innovative  strategies to provide services to youth with serious mental illness.  According to NIMH, while evidence-based and traditional treatment  models have been developed and tested for use with younger children and  adults, evidence-based interventions and services have not been  empirically tested on young adults or systematically adapted for this  specific age group. The goal of three of the research projects is to assess  the impact of tailoring existing treatment models to the needs of  transition-aged youth. For example, one researcher is planning to adapt an  established family-focused intervention approach for juvenile offenders to  one that gives youth offenders with serious mental illness more control of  their treatment and targets age-relevant social, work, and independent  living skills. Another project examines young adults’ use of primary care,  mental health services, and psychotropic medications, as well as their  overall mental health care costs. Agency officials told us information could  help inform future research and strategies that promote continuity of care  for young adults with serious mental illness as they transition to  adulthood.
section_title: Federal Interagency Groups Are Beginning to Coordinate Mental Health Services and Services for Youth in Transition and Youth with Disabilities
paragraphs: Although there are no federal interagency coordination efforts that focus  exclusively on young adults with serious mental illness, three independent  multiagency groups were recently formed to consider opportunities to  coordinate federal programs and could address the needs of this group.  According to agency officials, while efforts are not coordinated across  these three groups formally, they have similar agency and staff  participation. Figure 3 lists these groups, their target population, goals,  and participating agencies.
While interagency groups have been tasked with coordinating across  agencies, officials from a number of agencies noted that differences in  their missions and goals may make it difficult to coordinate services for  young adults with serious mental illness. For example, according to one  SAMHSA official, mental health agencies are more focused on maintaining  youth in the home or in a community-based setting, whereas juvenile  justice agencies are more focused on protecting the community from  youth offenders. Agency officials also cited differences in eligibility  criteria across programs as a challenge for coordination, stating that age  requirements for receiving benefits-–often written in statute-–vary across  some programs. Despite these limitations, ongoing federal coordination  efforts are beginning to address the needs of this population.
The Federal Executive Steering Committee on Mental Health was formed  in response to the 2003 President’s New Freedom Commission on Mental  Health, which made recommendations to the federal government to better  coordinate services, such as employment supports and housing, for those  with mental illness. The committee has taken steps to promote access to  supported employment services for young adults with serious mental  illness by reviewing existing federal programs and initiatives for youth  transitioning to the workforce to better coordinate their efforts. To  promote youth leadership and youth-guided policymaking related to  mental health at the federal level, the committee, led by Labor’s Office of  Disability Employment Policy, also held a National Youth Summit in 2007.  The President’s New Freedom Commission recommended actions to  address mental health stigma, and SAMHSA launched a campaign  specifically targeted to young adults.
The Shared Youth Vision Federal Collaborative Partnership was created to  strengthen coordination among federal youth-serving agencies. It was  formed in response to a report written by the White House Task Force on  Disadvantaged Youth in 2003, which identified challenges related to  coordination among youth-serving programs and prompted federal efforts  to support capacity building and collaboration among those agencies.  Many of the federal officials we spoke with indicated this initiative could  have an impact on young adults, including those with serious mental  illness. Sixteen states have received funding through this initiative to  develop interagency collaboration as well as state and local partnerships  to provide transition assistance to disadvantaged young adults, including  those with serious mental illness. For example, the Oklahoma Youth  Vision Project is working across eight state youth-serving agencies, Job  Corps, as well as local school districts, group homes, and employers to  help disadvantaged youth, particularly those aging out of foster care, aged  16 through 21, graduate from high school and become employed. In  addition, this initiative sponsors technical assistance forums for  participating federal agencies and runs a solutions desk that provides the  16 state grantees with a single point of access to federal resources such as  training and technical assistance in implementing federal grants related to  disadvantaged youth.
The third coordination initiative, Federal Partners in Transition  Workgroup, led by Labor’s Office of Disability Employment Policy, began  in June 2005 and focuses exclusively on disabled youth transitioning to  adulthood, including young adults with serious mental illness. The Federal  Partners in Transition Workgroup brings together federal agency staff who  work on youth, transition, and disability issues. This group has  concentrated on strengthening connections with employers and preparing  youth with disabilities for the labor market. It also plans to hold a forum in  2008 to coordinate federally funded transition-focused technical assistance  centers across agencies.
Although none of these federal interagency coordination groups or  existing programs focuses exclusively on young adults with serious mental  illness, overall they are beginning to explore ways to coordinate and  provide services to assist this group.
section_title: Concluding Observations
paragraphs: State investments in programs to help young adults with serious mental  illness become productive and independent are designed to address the  challenges these individuals face. The state and local officials we spoke  with appeared to be optimistic about the potential of efforts like theirs to  make a difference for these young adults. The federal government has  played a limited but important role in these efforts by funding  demonstrations and research and providing technical assistance.  Evaluations of these demonstration projects have shown some promising  outcomes, and the number of practices grounded in evidence-based  research continues to grow. While programs that assist transitional youth,  youth with disabilities, and the mentally ill are situated in different  departments, federal agencies are beginning to work together to  coordinate these programs to better serve young adults with serious  mental illness. The federal government’s continuing efforts to disseminate  information about promising state and local programs may sustain the  momentum in this area by providing valuable lessons and encouragement  to others interested in assisting young adults with serious mental illness.
section_title: Response to Agency Comments
paragraphs: We provided a draft of this report to Education, DOJ, HHS, HUD, Labor,  and SSA and draft sections concerning their states to agencies in  Connecticut, Maryland, Massachusetts, and Mississippi. We received  technical comments from all of the federal and state agencies, which we  incorporated where appropriate, and general comments from HHS, which  are included in appendix XIII. In its general comments, HHS indicated that  the report was pertinent and timely. However, HHS stated that the report  should have included a number of other important topics and should have  focused on younger individuals as well as those aged 18 through 26. While  we agree that additional research could be beneficial, our report focused  specifically on the objectives and population we agreed upon with our  requesters.  To better convey our scope, we revised the report title in  response to HHS’s suggestion.
HHS also commented that our definition of serious mental illness was  unclear. In particular, they took issue with our use of the NCS-R to  estimate the number of young adults with serious mental illness. They  believe that data from the NCS-R represent only a subset of those  individuals who would be considered to have a serious mental illness  under the definition used by SAMHSA to determine how states can use  Community Mental Health Block grant (see 58 Fed. Reg. 29422 (May 20,  1993), implementing Pub. L. 102-321). Specifically, they pointed out that  the NCS-R does not include those in institutions and does not identify  those with schizophrenia, or personality disorder. Additionally, HHS stated  that the researchers and consumer organizations that we interviewed were  weighted toward those with expertise in childhood mental illnesses and  did not include experts in schizophrenia or adult mental health consumer  organizations. HHS also stated that the report should have included a  more extensive discussion of serious emotional disturbance and the  degree to which states were providing services specifically for young  adults with serious mental illness.
Researchers and policy makers have long recognized that defining serious  mental illness in order to estimate its prevalence or to determine eligibility  for services presents a significant challenge. Our report generally uses a  definition of serious mental illness that is based on SAMHSA’s regulation  implementing Pub. L. 102-321. We clarified the text to explain that in  places throughout the report, we may use a slightly broader or narrower  concept of serious mental illness as necessitated by available data as well  as programmatic or administrative definitions. We used NCS-R data to  estimate the prevalence of serious mental illness on the basis of  recommendations from several researchers. In addition, the NCS-R was  identified in a SAMHSA publication as a source of nationally  representative data that measures the severity of mental disorders, which  relates to SAMHSA’s definition of serious mental illness. Our draft clearly  acknowledges the limitations of the NCS-R by stating that our estimate is  likely to be low. It also provides the number of individuals 18 through 26  with serious mental illness who receive SSI and DI benefits due to mental  illness. This number is likely to include young adults who may not have  been included in the NCS-R, such as those living in an institution and many  with schizophrenia or psychosis. To respond to HHS’s comments, we have  further highlighted our discussion of why limitations of the NCS-R result in  an underestimate of the number of young adults with serious mental  illness. With regard to the expertise of researchers and consumer  organizations we interviewed, we chose the individuals and groups we did  primarily because of their expertise in young adults with serious mental  illness and, in many cases, because they were recommended to us by  federal officials or researchers. While most also have an interest in a  younger population, this group included organizations that have a strong  interest in adult mental health issues, such as Mental Health America,  several National Alliance of Mental Illness chapters, and Black Mental  Health Alliance for Education and Consultation, Inc. In addition, we added  information in response to HHS comments to better distinguish serious  emotional disturbance from serious mental illness and information from  other research on the degree to which state mental health agencies are  implementing transition services.
As agreed with your offices, unless you make arrangements to release its  contents earlier, we will make no further distribution of this report until 30  days from the date of this letter.  At that time, we will send copies of this  report to Education, DOJ, HHS, HUD, Labor, and SSA. Copies will also be  made available to others on request. This report is also available at no  charge on GAO’s Web site at http://www.gao.gov.
Please contact us on (202) 512-7215 or (202) 512-7114 if you or your staff  have any questions about this report. Contact points for our Office of  Congressional Relations and Office of Public Affairs can be found on the  last page of this report. Other major contributors to this report are listed in  appendix XIV.
section_title: Appendix I: Scope and Methodology
paragraphs: To conduct our work, we relied on multiple methodologies, including data  analyses, literature reviews, interviews, and site visits to four states. More  specifically, to provide information on the number and demographic  characteristics of young adults with serious mental illness, which we  defined as individuals aged 18 through 26, we analyzed data from the  federally funded National Comorbidity Survey-Replication, 2001-2003  (NCS-R), of the 2006 Current Population Survey, Annual Social and  Economic Supplement (CPS), and two sources of data on individuals  receiving disability benefits from the Social Security Administration (SSA):  the 2006 Ticket Research File (TRF) and the National Beneficiary Survey,  2004 (NBS). We also reviewed published research on the extent of mental  illness among the homeless and those involved with the criminal justice or  foster care systems. To identify the challenges faced by young adults with  serious mental illness, we reviewed published research and interviewed  federal, state, and local officials; mental health practitioners; experts; and  advocacy groups. To describe the programs and strategies that selected  states are using to assist these youth, we visited four states that had  implemented programs specifically focused on this population— Connecticut, Maryland, Massachusetts, and Mississippi—and met with  officials from key state agencies and private organizations involved in  service delivery. To determine how federal agencies are supporting states  and coordinating federal programs to help young adults with serious  mental illness, we interviewed key federal officials from agencies within  the U.S. Department of Education (Education), Department of Health and  Human Services (HHS), Department of Housing and Urban Development  (HUD), Department of Justice (DOJ), Department of Labor (Labor), and  SSA. We also reviewed documents pertaining to the activities and  accomplishments of interagency coordination groups, as well as funding  and eligibility information on federal programs relevant to young adults  with serious mental illness. We conducted our work from June 2007  through June 2008 in accordance with generally accepted government  auditing standards.
subsections: section_title: Data Analyses
paragraphs: To provide information on the number and demographic characteristics of  young adults aged 18 through 26 with serious mental illness, we relied on  data from the NCS-R, the CPS, the TRF, and the NBS. We considered using  data from another survey, the National Survey on Drug Use and Health  conducted by the Substance Abuse and Mental Health Services  Administration (SAMHSA). Until 2004, SAMHSA reported rates of serious  mental illness based on this survey but has since determined that the  survey does not employ a sufficiently reliable measure of serious mental  illness and therefore no longer uses it for this purpose.
subsections: section_title: The National Comorbidity Survey Replication
paragraphs: The NCS-R is a nationally representative survey of English-speaking  household and campus group housing residents aged 18 and over living in  the contiguous United States. Funded primarily by the National Institute of  Mental Health, with supplemental funding from the National Institute on  Drug Abuse and the Substance Abuse and Mental Health Services  Administration (SAMHSA), the NCS-R served as the U.S. participation in  the World Health Organization’s World Mental Health Survey Initiative.  The household sample was selected using a multistage clustered area  probability sampling technique, and students living in campus-housing  were selected from the household sample. Between February 2001 and  April 2003, 7,693 individuals were interviewed, yielding a response rate of  71 percent. During the interviews, respondents were assessed for the  presence of mental disorders within the previous year, using the  Composite International Diagnostic Interview, a lay-administered survey  that generates diagnoses based on the American Psychiatric Association’s  Diagnostic and Statistical Manual of Mental Disorders--Fourth Edition  (DSM-IV) and the International Classification of Diseases--10.
To estimate the prevalence of serious mental illness in young adults, we  obtained the NCS-R public use data file, as well as a supplemental file  containing an indicator of the severity—serious, moderate, or mild—for  each respondent diagnosed with a mental illness. This severity indicator  was developed separately by the principal investigator of the NCS-R and is  not included in the public use file. Using these two files, we isolated the  1,589 respondents who were aged 18 through 26 and identified the subset  with serious mental illness as well as the subset with moderate, mild, or  no mental illness. We applied weighting variables to our estimates in order  to project these results to the general population of young adults in the  United States. Following this methodology, we obtained a prevalence  estimate of serious mental illness among young adults in U.S. households  of 6.5 percent.
To estimate the total number of young adults with serious mental illness in  2006, we obtained population estimates from the 2006 CPS. We applied the  6.5 percent prevalence estimate to the total civilian, noninstitutionalized  population estimate for young adults aged 18 through 26—37 million.  Because NCS-R data pertain to individuals surveyed between February  2001 and April 2003, our 2006 estimates are based on the assumption that  rates of serious mental illness were relatively stable among the young  adult population from that survey period through 2006. This is supported  by research that shows that the prevalence of serious mental illness  among adults in the United States did not change significantly between  1990 and 2003.
We also compared the demographic characteristics of the cohort of young  adults aged 18 through 26 with serious mental illness to the cohort of  young adults with mild or moderate mental illness and the cohort of those  with no mental illness. We applied weighting variables to project our  results to the general population of young adults in the United States, and  all estimates are presented using a 95 percent confidence interval, within  plus or minus 12 percentage points, unless otherwise noted. All tests of  statistical significance were conducted at the 5 percent significance level  for our analyses.
section_title: Ticket Research File
paragraphs: The TRF is a longitudinal database that combines administrative data from  multiple SSA databases for all Supplemental Security Income (SSI) and  Disability Insurance (DI) beneficiaries between age 18 and retirement age  from 1996 through 2006. SSA provided us with an extract file containing  data on the subset of 764,384 individuals aged 18 through 26 in 2006. We  identified 186,101 individuals whose primary disability was listed as a  serious mental illness at any point in 2006 by including those whose  impairment fell under any of the following categories: major affective  disorders, schizophrenia and psychoses, anxiety and neurotic disorders,  and certain other mental disorders. We then analyzed several  characteristics of those individuals, including race, gender, primary and  secondary disability, and benefit type, using information in the database.
section_title: National Beneficiary Survey
paragraphs: Sponsored by SSA’s Office of Disability and Income Security, the NBS is a  nationally representative survey of SSI and DI beneficiaries and Ticket to  Work participants between the ages of 18 and 64. The sample was selected  using a multistage clustered sampling technique, and 6,520 individuals  were interviewed between February and October 2004, for a weighted  response rate of 77.5 percent. We used the same methodology for  identifying the cohort of young adults with serious mental illness that we  used for the TRF, based on each respondent’s primary disabling condition.  In total, the subsample contained 1,436 respondents aged 18 through 26  and 356 that were found to have a serious mental illness listed as their  primary disability. We applied weighting variables to each estimate in  order to project our results to the general population of young adults  receiving disability benefits because of a serious mental illness, and all  estimates are presented using a 95 percent confidence interval, within plus  or minus 7 percentage points. Finally, we identified demographic data in  the NBS that could be directly compared to demographic data in the   NCS-R.
section_title: Data Reliability
paragraphs: We determined that data from the NCS-R, CPS, TRF, and NBS were  sufficiently reliable for our purposes. In order to assess the reliability of  the NCS-R, CPS, and NBS, we reviewed documentation pertaining to the  sampling methodologies, survey instruments, and the structure of the data  files. In order to assess the reliability of TRF data, we reviewed  documentation on the construction of the file and the data reliability tests  conducted by SSA’s contractor—Mathematica Policy Research, Inc.
section_title: Literature Review
paragraphs: To provide information on the number of young adults with serious mental  illness who are in certain vulnerable populations—specifically, those who  are homeless or involved in the justice or foster care systems—we  conducted a literature review that included published peer-reviewed  research articles identified through databases such as ProQuest,  Dissertations, Ovid, PsycINFO, PsycFirst, MEDLINE, ECO/WorldCat,  Social Science Abstracts, and GAO publications. We used various search  terms, such as young adult, mental illness, homeless, incarcerated, and  foster care, in searching these databases, and we selected original  research published since 1990. We were unable to identify any original  research since 1990 that provided national estimates of the rates of serious  mental illness in young adults in the three vulnerable populations. We did  identify research on rates of mental illness in these vulnerable  populations. We reviewed these studies’ findings for methodological rigor  and determined that they were sufficiently reliable for the purposes of this  study.
To learn more about the major challenges faced by young adults with  serious mental illness and their families, as well as their demographic  characteristics, we conducted a literature review using the same databases  identified above. We used various search terms, such as young adult,  mental illness, challenges, support needs, service needs, family, and  caregivers, and selected original research published since 1995. We also  collected other literature cited in these studies as well as literature  recommended to us during our interviews. We then conducted a more  intensive review of the 18 studies identified through these methods. For  each selected study, we reviewed the study’s findings for methodological  rigor and determined that it was sufficiently reliable for the purposes of  this study.
section_title: Interviews with Researchers and Mental Health Organizations
paragraphs: To gather information related to all four objectives, we also conducted  interviews with academic researchers and other experts on mental health  issues, including some who represented mental health organizations. We  identified interviewees through our literature review and through  recommendations from federal agency officials and other mental health  experts. In addition, we identified mental health-related organizations in  the states we visited as part of our site visits. For this study we  interviewed:  Hewitt B. Clark, Ph.D., University of South Florida;  Maryann Davis, Ph. D., University of Massachusetts;  Mary Molewyk Doornbos, Ph.D., R.N., Calvin College;  Donna Folkemer, National Conference of State Legislatures;  Vicki Hines-Martin, Ph.D., R.N., C.S., University of Louisville;  Ronald C. Kessler, Ph.D., Harvard Medical School, Harvard University;  Chris Koyanagi, Judge David L. Bazelon Center for Mental Health Law;  Linda Rose, R.N., Ph.D., The Johns Hopkins University School of Nursing;  Ann Vander Stoep, Ph.D., University of Washington;  Mary Wagner Ph.D., SRI International.
We also interviewed representatives from the following advocacy groups:  Black Mental Health Alliance for Education and Consultation, Inc.;  Maryland Coalition of Families for Children’s Mental Health; Mississippi  Families as Allies for Children’s Mental Health, Inc.; Family Advocates for  Children and Behavioral Health, Connecticut; National Federation of  Families for Children’s Mental Health; Generations United; National  Alliance on Mental Illness, headquarters and chapters in Connecticut,  Massachusetts, and Maryland; Mental Health America; National Family  Caregivers Association; National Council on Independent Living; and Self  Reliance, Inc., Center for Independent Living.
section_title: Site Visits
paragraphs: To describe the programs and strategies that selected states are using to  assist young adults with serious mental illness, we visited four states that  had implemented programs specifically focused on this population— Connecticut, Maryland, Massachusetts, and Mississippi. To identify these  states, we reviewed published research and interviewed federal and state  officials, mental health researchers, and advocacy groups to learn of states  that were viewed as offering progressive statewide or state-organized  programs that focus specifically on young adults with serious mental  illness. Programs in these states should not be considered representative  of how states assist young adults with serious mental illness nationally;  rather, they serve as examples of states that are providing such assistance.  We considered other states identified by research or by the officials,  researchers, and advocacy groups, but these states generally had small,  local programs available to serve young adults with serious mental illness,  not statewide or state-organized programs. Before we made the site visits,  we reviewed available literature on the four states’ mental health systems  and programs, including state mental health planning documents and  federal grants pertaining to this population.
During the site visits, we met with officials from state mental health  agencies, as well as other key state agencies and private sector  organizations involved in providing, coordinating, or advocating for  services for this population. During some of these meetings, we spoke  with young adult consumers of state mental health services. Given that  state mental health agencies are responsible for administering and  coordinating services across the state for individuals with serious mental  illness, we relied on each state mental health agency to serve as the lead  agency in arranging visits with local mental health organizations, other  state agencies, and private organizations.
While state programs that assist young adults with serious mental illness  varied in the specific age ranges they targeted, for purposes of this report  we focused on the key programs that state mental health agency officials  identified, which generally served individuals aged 16 through 25. In  addition, we reviewed written information on state policies and programs  provided by state officials we interviewed.
section_title: Appendix II: Federal Programs Identified by Bazelon as Helping Young Adults with a Serious Mental Illness (SMI)
paragraphs: Appendix II: Federal Programs Identified by  Bazelon as Helping Young Adults with a  Serious Mental Illness (SMI)
Engaging Persons with Disabilities in National and Community  Services Grants  Drug-Free Communities Support Program Grants  Juvenile Justice and Delinquency Prevention State Formula  Grant   Title V Community Prevention Grants Program  National Guard Youth ChalleNGe Program  Elementary and Secondary School Counseling Program   Federal Direct Student Loan and Family Education Loan  Programs  Grants for the Integration of Schools and Mental Health  Systems   Federal Supplemental Educational Opportunity Grants  Safe and Drug Free Schools  Vocational and Adult Education State Basic Grants  Vocational Rehabilitation: Supported Employment State Grants  Vocational Rehabilitation, Title I Formula Grants  Community Mental Health Services Block Grant  Comprehensive Community Mental Health Services for Children  and Their Families  Educational and Training Vouchers Program for Youths Aging  out of Foster Care  Health Care for the Homeless  Healthy and Ready to Work Initiative  John H. Chafee Foster Care Independence Program  Maternal & Child Health Block Grant  Medicaid  Partnerships for Youth in Transition  Projects for Assistance in Transition from Homelessness -  PATH   Runaway and Homeless Youth Act Programs  State Adolescent Substance Abuse Treatment Coordination  Substance Abuse Prevention and Treatment Block Grant  Temporary Assistance for Needy Families  Title IV-B and Promoting Safe and Stable Families  Title IV-E – Payments for Children in Foster Care  Youth Transition Into the Workplace Grant  Safe Schools and Healthy Students Initiative  Section 8 Housing Choice Vouchers  Workforce Investment Act Youth Formula Grants  Ticket-To-Work and Work Incentives Improvement  Special Supplemental Nutrition for Women, Infants and Children  (WIC)
section_title: Appendix III: Evidence-Based Practices Promoted by SAMHSA
paragraphs: Helps people stay out of the hospital and develop  skills for living in the community, through  treatment customized to individual needs  delivered by a team of practitioners, available 24  hours a day.
Integrated treatment for mental illness and  substance abuse addiction for people who have  these co-occurring disorders.
Involves a partnership among consumers,  families, and practitioners to learn ways to  manage mental illness and reduce tension and  stress within the family.
Emphasizes helping people set and pursue  personal goals and implement action strategies  in their everyday lives.
A well-defined approach to help people with  mental illness find and keep competitive  employment within their communities, through  employment services that are integrated with  mental health treatment.
section_title: Appendix IV: Demographic Characteristics of Young Adults Aged 18–26, by Severity of Mental Illness, 2001–2003
paragraphs: Appendix IV: Demographic Characteristics of  Young Adults Aged 18–26, by Severity of  Mental Illness, 2001–2003 45% (34-56)
43% (38-49)
53% (49-58)
55 (44-67)
57 (51-62)
47 (42-51)
59 (47-72)
68 (61-75)
64 (59-70)
19 (11-27)
11 (6-15)
12 (8-16)
17 (10-24)
16 (11-21)
19 (15-23)
5 (1-8)
5 (2-9)
5 (3-7)
20 (11-28)
16 (11-21)
19 (12-27)
26 (17-36)
20 (15-26)
21 (17-26)
34 (25-43)
35 (26-44)
33 (26-41)
20 (8-32)
29 (16-41)
26 (15-37)
20 (13-28)
25.5 (21-30)
20 (16-23)
80 (72-87)
74.5 (70-79)
80 (77-84)
71 (57-84)
75 (69-81)
81 (76-85)
29 (16-43)
25 (19-31)
19 (15-24)
63 (52-75)
68 (62-73)
71 (67-75)
37 (25-48)
32 (27-38)
29 (25-33)
36 (24-47)
19 (15-23)
17 (14-21)
32 (24-40)
35 (28-42)
31 (25-38)
32 (24-41)
46 (39-54)
51 (44-59)
71 (61-81)
73 (38-78)
75 (70-80)
29 (19-39)
27 (22-32)
25 (20-30)
section_title: Appendix V: Demographic Characteristics of Young Adults 18-26 Who Received SSA Disability Benefits Because of a SMI
paragraphs: Appendix V: Demographic Characteristics of  Young Adults 18-26 Who Received SSA  Disability Benefits Because of a SMI Results from the Ticket Research File, 2006  Results from the National Beneficiary Survey, 2004  10% (6-13) 90 (87-94) 15 (10-19) 85 (81-90) 59 (53-66) 41 (34-47) 48 (41-55) 42 (36-48)  10 (7-13) 93 (89-96)   7 (4-11)
section_title: Appendix VI: Selected Programs States Can Use to Target or Provide Comprehensive Services for Young Adults with SMI
paragraphs: The Justice and Mental Health Collaboration Program was created to increase  public safety by facilitating collaboration among the criminal justice, juvenile  justice, and mental health and substance abuse treatment systems to increase  access to services for offenders with mental illness.
Jointly funded by SSA and Labor, the Disability Program Navigator Initiative  funds program liaisons who seek to coordinate all federally funded services to  assist disabled individuals with employment training and employment  placement at One-Stop centers which were established under the Workforce  Investment Act of 1998.
The Individuals with Disabilities Education Act authorizes formula grants to  states and discretionary grants to institutions of higher education and other  non-profit organizations to support research, demonstrations, technical  assistance and dissemination, technology and personnel development, and  parent-training and information centers.
Under Title I of the Rehabilitation Act, these grants provide federal funds to  help cover the costs of providing vocational rehabilitation services which  include assessment, counseling, vocational and other training, and job  placement necessary for an individual with a disability to achieve an  employment outcome.
Activities under this program include carrying out special demonstrations for  expanding and improving the provision of rehabilitation and other services  including: technical assistance, special studies and evaluations,  demonstrations of service delivery, transition services, supportive employment,  services to underserved populations and/or unserved or underserved areas,  among other services.
This SAMHSA grant focuses on a state’s infrastructure in order to reduce  fragmentation of services across systems.
These CMS grants are specifically intended to help states build the  infrastructure that will result in improvements in integrated community-based  services.
This grant program was created by SAMHSA to provide community-based  systems of care for children and adolescents with a serious emotional  disturbance and their families.
The CMS Medicaid buy-in program allows states to expand Medicaid coverage  to workers with disabilities whose income and assets would ordinarily make  them ineligible for Medicaid.
The CMS Medicaid rehabilitation option provides a more flexible benefit and  can be provided in other locations in the community, including in the person’s  home or other living arrangement. Rehabilitation services may extend beyond  the clinical treatment of a person’s mental illness to include helping the person  to acquire the skills that are essential for everyday functioning.
This grant creates a system of flexible financing for long-term services and  supports that enable available funds to move with the individual to the most  appropriate and preferred setting as the individual’s needs and preferences  change. Populations targeted for transition include individuals of all ages with  disabilities including mental illness.
section_title: Appendix VII: Overview of Programs for Young Adults with SMI in Four States
paragraphs: This appendix provides an overview of the key programs that target  services for young adults with serious mental illness in the four states we  visited—Connecticut, Maryland, Massachusetts, and Mississippi.
Connecticut’s Department of Mental Health and Addiction Services  administers the Young Adult Services program. Since 1998 in coordination  with the Department of Children and Families and several other state  agencies, this program has provided mental health treatment, supported  employment, vocational or educational support, life skills training, and  supportive housing, with the particular array and level of care varying  slightly by location. Connecticut offers different levels of care, ranging  from basic case management services and employment and educational  support to highly structured group homes or supervised housing programs  with intensive case management, or Assertive Community Treatment  programs. In addition, some programs are gender specific. Sixteen of the  21 local mental health authorities offer the Young Adult Services program.  State officials indicated that they launched the program due to a federal  lawsuit, which resulted in legislative funding for as special group of young  adults who were diagnosed with pervasive developmental disorders and  exhibited high risk sexual behavior issues. The program evolved to  encompass a broader cohort of young adults with severe behavioral health  issues and high risk behavior who, without any services, would have  ended up in jail or homeless. Because many of these young adults spent  most of their lives in institutional settings, such as psychiatric  rehabilitative treatment centers, they had not developed interpersonal  skills to effectively live in the community. In state fiscal year 2007, 716  individuals were served in the Young Adult Services program or about  27 percent of the 2,615 young adults with serious mental illness receiving  any mental health services from the state mental health agency.
Maryland’s Mental Hygiene Administration, within the Maryland  Department of Health and Mental Hygiene, administers the Transition-Age  Youth Initiative, which consists of various programs that provide mental  health treatment, supported employment, life skills training, residential  services, and, in some cases, supportive housing in the community. Eleven  of the state’s 20 mental health agencies offer services through this  initiative, although the type and number of services offered vary by region.  Some of these programs provide a greater array of services, including  various types of mental health treatment services with supported  employment, residential, and supportive housing, while others provide  more limited case management services. Maryland mental health agency  officials stated that program variety was beneficial, because a particular  program design will work well for some young adults but not others. State  officials told us that Maryland’s Transition-Age Youth programs originated  in the late 1990s when the Governor launched an initiative to expand  services for young adults with disabilities who were transitioning from the  children’s system. As part of the initiative, funds were made available to  the various agencies that serve these youth, including the Mental Hygiene  Administration. With the money, mental health agency officials decided to  fund a variety of types of small programs around the state, with the goal of  evaluating them to identify promising programs that could be expanded. A  Maryland mental health official said that funds were used to leverage and  maximize other types of funds in order to create new services. While these  Transition-Age Youth programs continue, a comprehensive evaluation has  not been done. In fiscal year 2007, 8,753 young adults aged 18 through 24  received services from the Department of Mental Health and Hygiene, of  which 415 received case management and 287 received supported  employment services. In total, the state funded the Transition-Age Youth  Initiative, which has capacity to treat about 250 individuals per year. Age  criteria for individual programs differs, with one program serving  individuals as young as 13 and another covering individuals as old as 25.
Massachusetts’s Department of Mental Health established the Transition  Age-Youth Initiative in 2005 to assist young adults with serious mental  illness, including those transitioning from the children’s mental health  system to the adult system, as well as those aging out of foster care or the  juvenile justice systems. This initiative provides an array of age- appropriate services to individuals aged 16 through 25 that address their  needs in the areas of mental health treatment, vocational rehabilitation,  employment, housing, peer support, and family psychoeducation. As part  of this effort, as of January 2008, the Massachusetts Department of Mental  Health had trained both child and adult case managers, as well as 36  Transition Age Youth case managers on the special needs of transition-age  youth to better prepare them to assist young adults with serious mental  illness in accessing services from the adult mental health system,  according to a state mental health official. Transition-Age Youth services  are available in all six Massachusetts Mental Health Service Delivery  Areas, but the array of services differs by location. State officials cited  several factors that influenced the development of the Transition-Age  Youth Initiative. One factor was a concern about an area office that  reported a decrease in the number of young adults requesting services  after transitioning out of the children’s mental health system. After  researching the situation, the state found that the adult mental health  program had not been providing the types of transition services that this  age group needed and found appealing. Another factor was the issuance of  the President’s New Freedom Commission on Mental Health report and  various other publications on transition-age youth by mental health  researchers. In 2007, about 2,600 individuals were enrolled in the  Transition-Age Youth Initiative, according to a state mental health official.
In contrast with other states, Mississippi does not have a centralized and  statewide program for young adults with serious mental illness but has  several small-scale initiatives for this population. One of its key initiatives  is the Transition Outreach Program, which provides mental health,  supported employment, and life skills training to adolescents and young  adults in two locations—Hattiesburg and Jackson. This program assists  young adults in developing healthy relationships that can motivate them to  change their behavior. This program developed because of the gap in  services for the transition-age youth with serious mental illness. According  to the officials, eventually young people would return to the mental health  system, resurfacing at a mental health facility and in crisis. By June 2007,  the Transitional Outreach Program had served more than 150 individuals.  Another key initiative is the “Multidisciplinary Assessment and Planning  Teams,” which consist of officials from various state agencies and  advocates that meet to review cases that include youth ages 14 to 21  transitioning from the child to adult mental health systems, as well as  other youth considered to be high-risk. Established in 1996, these teams  also coordinate the delivery of multiple services including mental health,  education, vocational rehabilitation, health care, and juvenile justice  services. As of November 2007 the teams were operating in 33 of 82  counties.
section_title: Appendix VIII: Comments from the Department of Health and Human Services
section_title: Appendix XIV: GAO Contacts and Staff Acknowledgments
subsections: section_title: Staff Acknowledgments
paragraphs: In addition to the contacts named above, Clarita A. Mrena and Sheila K.  Avruch, Assistant Directors; Irene Barnett, Kimberly Siegal, and Yorick  Uzes, Analysts-in-Charge; Rachel Beers; Laura Brogan; Leigh Ann Nally;  and Carmen Rivera-Lowitt, made major contributions to this report.  Martha Kelly, Jean McSween, Suzanne Worth and Paul Gold provided  assistance with design and analysis; Susan Bernstein advised on report  preparation; and Roger Thomas provided legal advice.
section_title: Selected Bibliography
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section_title: Related GAO Products
paragraphs: GAO, Disconnected Youth: Federal Action Could Address Some of the  Challenges Faced by Local Programs That Reconnect Youth to Education  and Employment, GAO-08-313 (Washington, D.C.: Feb. 28, 2008)
GAO, Residential Treatment Programs: Concerns Regarding Abuse and  Death in Certain Programs for Troubled Youth, GAO-08-146T  (Washington, D.C.: Oct. 10, 2007)
GAO, School Mental Health: Role of the Substance Abuse and Mental  Health Services Administration and Factors Affecting Service Provision,  GAO-08-19R (Washington, D.C.: Oct. 05, 2007)
GAO, Child Welfare: HHS Actions Would Help States Prepare Youth in  the Foster Care System for Independent Living, GAO-07-1097T  (Washington, D.C.: Jul. 12, 2007)
GAO, African American Children in Foster Care: Additional HHS  Assistance Needed to Help States Reduce the Proportion in Care, GAO-07- 816 (Washington, D.C.: Jul. 11, 2007)
GAO, Child Welfare: Additional Federal Action Could Help States  Address Challenges in Providing Services to Children and Families,  GAO-07-850T (Washington, D.C.: May. 15, 2007)
GAO, Child Welfare: Improving Social Service Program, Training, and  Technical Assistance Information Would Help Address Long-standing  Service-Level and Workforce Challenges, GAO-07-75 (Washington, D.C.:  Oct. 06, 2006)
GAO, D.C. Child and Family Services Agency: Performance Has  Improved, but Exploring Health Care Options and Providing Specialized  Training May Further Enhance Performance, GAO-06-1093 (Washington,  D.C.: Sep. 28, 2006)
GAO, Summary of a GAO Conference: Helping California Youths with  Disabilities Transition to Work or Postsecondary Education, GAO-06- 759SP (Washington, D.C.: Jun. 20, 2006)
GAO, Child Welfare: Federal Oversight of State IV-B Activities Could  Inform Action Needed to Improve Services to Families and Statutory  Compliance, GAO-06-787T (Washington, D.C.: May. 23, 2006)
GAO, Children’s Health Insurance: Recent HHS-OIG Reviews Inform the  Congress on Improper Enrollment and Reductions in Low-Income,  Uninsured Children, GAO-06-457R (Washington, D.C.: Mar. 09, 2006)
GAO, District of Columbia: Federal Funds for Foster Care Improvements  Used to Implement New Programs, but Challenges Remain, GAO-05-787  (Washington, D.C.: Jul. 22, 2005)
GAO, Medicaid Financing: States’ Use of Contingency-Fee Consultants  to Maximize Federal Reimbursements Highlights Need for Improved  Federal Oversight, GAO-05-748, (Washington, D.C.: June 28, 2005).
GAO, Child Welfare: Better Data and Evaluations Could Improve  Processes and Programs for Adopting Children with Special Needs, GAO- 05-292 (Washington, D.C.: Jun. 13, 2005)
GAO, Medicaid Managed Care: Access and Quality Requirements  Specific to Low-Income and Other Special Needs Enrollees, GAO-05-44R  (Washington, D.C.: Dec. 08, 2004)
GAO, Foster Youth: HHS Actions Could Improve Coordination of  Services and Monitoring of States’ Independent Living Programs, GAO- 05-25 (Washington, D.C.: Nov. 18, 2004)
GAO, D.C. Child And Family Services Agency: More Focus Needed on  Human Capital Management Issues for Caseworkers and Foster Parent  Recruitment and Retention, GAO-04-1017 (Washington, D.C.: Sep. 24,  2004)
GAO, Substance Abuse and Mental Health Services Administration:  Planning for Program Changes and Future Workforce Needs is  Incomplete, GAO-04-683 (Washington, D.C.: June 4, 2004)
GAO, Child Welfare: Improved Federal Oversight Could Assist States in  Overcoming Key Challenges, GAO-04-418T (Washington, D.C.: Jan. 28,  2004)
GAO, Child Welfare: Enhanced Federal Oversight of Title IV-B Could  Provide States Additional Information to Improve Services, GAO-03-956  (Washington, D.C.: Sep. 12, 2003)
GAO, Child Welfare: Most States Are Developing Statewide Information  Systems, but the Reliability of Child Welfare Data Could Be Improved,  GAO-03-809 (Washington, D.C.: Jul. 31, 2003)
GAO, Child Welfare and Juvenile Justice: Several Factors Influence the  Placement of Children Solely to Obtain Mental Health Services, GAO-03- 865T (Washington, D.C.: Jul. 17, 2003)
GAO, Child Welfare and Juvenile Justice: Federal Agencies Could Play a  Stronger Role in Helping States Reduce the Number of Children Placed  Solely to Obtain Mental Health Services, GAO-03-397 (Washington, D.C.:  Apr. 21, 2003)
GAO, Medicaid and SCHIP: States Use Varying Approaches to Monitor  Children’s Access to Care, GAO-03-222 (Washington, D.C.: Jan. 14, 2003)