Young Adults With Serious Mental Illness
Some States and Federal Agencies Are Taking Steps to Address Their Transition Challenges Gao ID: GAO-08-678 June 23, 2008The 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.
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.
GAO-08-678, Young Adults With Serious Mental Illness: Some States and Federal Agencies Are Taking Steps to Address Their Transition Challenges
This is the accessible text file for GAO report number GAO-08-678
entitled 'Young Adults with Serious Mental Illness: Some States and
Federal Agencies Are Taking Steps to Address Their Transition
Challenges' which was released on June 25, 2008.
This text file was formatted by the U.S. Government Accountability
Office (GAO) to be accessible to users with visual impairments, as part
of a longer term project to improve GAO products' accessibility. Every
attempt has been made to maintain the structural and data integrity of
the original printed product. Accessibility features, such as text
descriptions of tables, consecutively numbered footnotes placed at the
end of the file, and the text of agency comment letters, are provided
but may not exactly duplicate the presentation or format of the printed
version. The portable document format (PDF) file is an exact electronic
replica of the printed version. We welcome your feedback. Please E-mail
your comments regarding the contents or accessibility features of this
document to Webmaster@gao.gov.
This is a work of the U.S. government and is not subject to copyright
protection in the United States. It may be reproduced and distributed
in its entirety without further permission from GAO. Because this work
may contain copyrighted images or other material, permission from the
copyright holder may be necessary if you wish to reproduce this
material separately.
Report to Congressional Requesters:
United States Government Accountability Office:
GAO:
June 2008:
Young Adults with Serious Mental Illness:
Some States and Federal Agencies Are Taking Steps to Address Their
Transition Challenges:
GAO-08-678:
GAO Highlights:
Highlights of GAO-08-678, a report to congressional requesters.
Why GAO Did This Study:
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.
What GAO Found:
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.
To view the full product, including the scope and methodology, click on
[hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-08-678]. For more
information, contact Cornelia M. Ashby at ashbtc@gao.gov or Cynthia A.
Bascetta at bascettac@gao.gov.
[End of section]
Contents:
Letter:
Results in Brief:
Background:
More Than 2 Million Young Adults Have a Serious Mental Illness That Can
Affect Their Education and Employment:
Young Adults with Serious Mental Illness Face Challenges Accessing
Appropriate Support:
Selected States Provide Multidimensional Services to Young Adults with
Serious Mental Illness Using Various Strategies:
Federal Agencies Have Supported Demonstrations, Provided Technical
Assistance and Research, and Formed Interagency Working Groups:
Concluding Observations:
Response to Agency Comments:
Appendix I: Scope and Methodology:
Appendix II: Federal Programs Identified by Bazelon as Helping Young
Adults with a Serious Mental Illness (SMI):
Appendix III: Evidence-Based Practices Promoted by SAMHSA:
Appendix IV: Demographic Characteristics of Young Adults Aged 18-26, by
Severity of Mental Illness, 2001-2003:
Appendix V: Demographic Characteristics of Young Adults 18-26 Who
Received SSA Disability Benefits Because of a SMI:
Appendix VI: Selected Programs States Can Use to Target or Provide
Comprehensive Services for Young Adults with SMI:
Appendix VII: Overview of Programs for Young Adults with SMI in Four
States:
Appendix VIII: Comments from the Department of Health and Human
Services:
Appendix XIV: GAO Contacts and Staff Acknowledgments:
Selected Bibliography:
Related GAO Products:
Tables:
Table 1: Examples of Federal Programs That Can Provide or Fund Mental
Health Services to Young Adults with Serious Mental Illness:
Table 2: Examples of Federal Programs That Can Provide Educational or
Employment-Related Services to Young Adults with Serious Mental
Illness:
Table 3: Examples of Federal Programs That Can Provide Housing Support
to Young Adults with Serious Mental Illness:
Table 4: Estimated Prevalence of Commonly Diagnosed Mental Illnesses
among Young Adults Aged 18-26 with Serious Mental Illnesses:
Table 5: Estimated Prevalence of Mental Disorders among Young Adults
Aged 18-26 Receiving SSI or DI or Both Because of a Serious Mental
Illness:
Table 6: Estimated Education, Employment, and Income for Young Adults
Receiving SSI or DI Because of a Serious Mental Illness Compared to the
General Population of Young Adults with Serious Mental Illness:
Figures:
Figure 1: Estimated Prevalence of Mental Illness among Young Adults
Aged 18 through 26 in 2006, by Severity:
Figure 2: Rates of Education among Young Adults, Aged 18-26:
Figure 3: Federal Coordination Efforts on Mental Health, Youth in
Transition, and Transitioning Youth with Disabilities:
Abbreviations:
CMS: Centers for Medicare & Medicaid Services:
CPS: Current Population Survey:
DI: Disability Insurance:
DOD: Department of Defense:
DOJ: Department of Justice:
DOT: Department of Transportation:
DSM-IV: Diagnostic and Statistical Manual of Mental Disorders-Fourth
Edition:
HHS: Department of Health and Human Services:
HUD: Department of Housing and Urban Development:
IEP: individualized education program:
NBS: National Beneficiary Survey:
NCS-R: National Comorbidity Survey Replication:
NIMH: National Institute of Mental Health:
SAMHSA: Substance Abuse and Mental Health Services Administration:
SSA: Social Security Administration:
SSI: Supplemental Security Income:
TIP: Transition to Independence Process:
TRF: Ticket Research File:
USDA: U.S. Department of Agriculture:
VA: Veterans Administration:
WIA: Workforce Investment Act:
[End of section]
United States Government Accountability Office:
Washington, DC 20548:
June 23, 2008:
The Honorable Pete Stark:
Chairman:
Subcommittee on Health:
Committee on Ways and Means:
House of Representatives:
The Honorable Gordon Smith:
Ranking Member:
Special Committee on Aging:
United States Senate:
The transition from adolescence to adulthood is a challenging time in
which individuals assume greater responsibility for their independence
and make critical decisions about relationships and careers that affect
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 mental illness, such as acute schizophrenia or acute bipolar
disorder. The interpersonal skills and sound judgment most needed
during young adulthood are precisely those skills that can be impaired
by a serious mental illness. Moreover, the severity of mental illness
can vary over time, and experiencing severe episodes during this
transition period can derail young adults from completing school or
beginning a career. When young people with serious mental illness do
not successfully transition to adulthood, the result can be economic
hardship, social isolation, and in some cases suicide, all of which can
pose substantial costs to society.
While public mental health services are primarily administered by
states, a variety of federal programs can assist young adults with
serious mental illness as they transition to adulthood. Because of
concerns about young adults with serious mental illness transitioning
into adulthood, you asked us to provide information on (1) the number
of young adults with serious mental illness and their demographic
characteristics, (2) the challenges they face, (3) how selected states
assist these young adults, and (4) how the federal government supports
states in serving these young adults and 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,[Footnote 1] 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).[Footnote 2] 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.[Footnote 3] 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.[Footnote 4]
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.
Results in Brief:
We estimate that at least 2.4 million young adults aged 18 through 26-
-or 6.5 percent of the 37 million 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. This
estimate of 2.4 million is likely to be low because certain groups that
may have high rates of mental illness, such as the institutionalized,
were not included in the NCS-R. Nearly 90 percent of young adults with
serious mental illness had more than one type of disorder. For example,
32 percent of these young adults had a drug or alcohol-related disorder
in addition to another type of mental disorder. We also found that,
compared to young adults with no mental illness, those with serious
mental illness have significantly lower rates of high school graduation
(64 versus 83 percent) and continuation into postsecondary education
(32 versus 51 percent). Our analysis of SSA data indicates that, in
2006, about 186,000 young adults with serious mental illness received
disability benefits because their mental illness was determined to be
severe enough to prevent them from engaging in substantial employment.
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; however, evidence suggests that young adults in these
groups have high rates of mental illness overall.
Young adults with serious mental illness face several challenges,
including finding services tailored to their specific needs, qualifying
for adult programs that provide access to mental health services, and
navigating multiple programs and delivery systems. Existing public
mental health, employment, and housing programs are not necessarily
tailored to their mental disability or age range, which may discourage
these young adults from participating. For example, officials in three
states we visited stated that Workforce Investment Act (WIA) youth
centers could not provide the intense, customized support that young
adults with serious mental illness need, and state officials also
indicated that there are not enough permanent housing options tailored
to this age group. With regard to access to mental health services,
those who received free or low-cost services as children may not
qualify for them as adults. According to the National Council on State
Legislatures, states' clinical criteria for receiving public mental
health services are generally narrower for adults than for children.
Similarly, Medicaid income requirements are more stringent for adults,
and differences in criteria for child and adult disability benefits
from SSA can result in a loss of benefits during redetermination at age
18 for youth who had received benefits as children. Finally,
researchers and public officials cite the difficulty young adults with
serious mental illness may have navigating the multiple discrete
programs that may address their varied needs.
The four states we visited--Connecticut, Maryland, Massachusetts, and
Mississippi--have developed programs that offer multidimensional
services designed for young adults with serious mental illness as they
transition into adulthood. The services are intended to be age-
appropriate and to address various needs, such as mental health care,
vocational rehabilitation, employment, life-skills development, and, in
some cases, housing. In Connecticut, the program initially focused on
individuals referred from the Department of Children and Families, but
it 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 state programs vary in size, with some serving a
relatively small number of young adults, and none have been
systematically evaluated to determine their effectiveness. States have
used a variety of strategies to provide these services to young adults
with serious mental illness. One strategy has been to coordinate
services across multiple state agencies by establishing formal referral
processes or launching interagency task forces. This strategy can
provide a bridge for individuals who were receiving services and
supports from one agency as children and must transition to another
agency in order to continue to receive those services and supports as
adults. Another is to leverage resources by combining funds from
federal and state sources. States have also used certain service
delivery models promoted by the Substance Abuse and Mental Health
Services Administration (SAMHSA) as evidence-based practices. One such
practice, supported employment, assists young adults with obtaining and
retaining competitive employment in the community as part of their
mental health treatment. Another strategy has been to involve young
adults with serious mental illness and their family members in
developing policies and aligning services for these programs.
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 these young adults and is
beginning to coordinate programs that can assist them. While we found
that there are currently no federal programs that specifically target
this population, SAMHSA and Education formerly sponsored the
Partnerships for Youth in Transition program of 2002-2006 to foster
state-funded programs for transition-age youth with serious mental
illness. This initiative has yielded ongoing collaborative transition
programs at several sites in five states: Maine, Minnesota,
Pennsylvania, Utah, and Washington. An evaluation of the young adults
participating in the programs suggests that there may be some positive
outcomes for them, and SAMHSA plans to promote similar initiatives in
other states. Federal agencies also fund other demonstration projects
that support state and local efforts to provide or better coordinate
existing services for transition-aged individuals, although these
programs are not targeted to young adults who have a serious mental
illness. In addition, federal agencies are providing some support to
states and localities through technical assistance and research. For
example, Labor's National Collaborative on Workforce and Disability for
Youth provides technical assistance to One-Stop Centers to increase
their capacity to serve individuals aged 14 through 25 who have
disabilities, which include serious mental illness. Additionally, the
National Institute of Mental Health (NIMH) is funding research on
innovative strategies to better serve this population. 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, although none are focused on
young adults with serious mental illness.
We provided a draft of this report to Education, DOJ, HHS, HUD, Labor,
and SSA as well as draft sections concerning their states to
Connecticut, Maryland, Massachusetts, and Mississippi. We received
technical comments from all of the federal agencies and states, which
we incorporated where appropriate, and general comments from HHS. In
its general comments, HHS indicated that the report was pertinent and
timely but expressed some confusion over our definition of serious
mental illness and noted that the report's scope could be expanded in a
number of ways. We clarified our definitions and noted that, while
additional research could be beneficial, the scope of our report
focused on the objectives and population agreed upon with our
requesters. Written comments from HHS are included in appendix VIII.
Background:
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.
Mental Illness and Disability:
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.[Footnote 5] 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.[Footnote 6] Although
research shows that 50 percent of mental disorders begin by age 14,
[Footnote 7] 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.[Footnote 8] 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." [Footnote 9] 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.
[Footnote 10] 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.[Footnote 11]
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.
Public Mental Health System:
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.
Federal Programs That Can Assist Young Adults with Serious Mental
Illness:
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).
Programs Funding Mental Health Services:
The federal government funds mental health services that are provided
by programs administered by state agencies. Table 1 lists five examples
of such programs.
Table 1: Examples of Federal Programs That Can Provide or Fund Mental
Health Services to Young Adults with Serious Mental Illness:
Department: HHS;
Program: Community Alternatives to Psychiatric Residential Treatment
Facilities Demonstration Grants Program;
Purpose: Five-year demonstrations to help provide alternatives to
psychiatric residential treatment facilities for children up to age 21
and allow coverage of a comprehensive package of community-based
services for these youths such as 24-hour support and crisis
intervention, respite care for families and after-school support
programs.
Department: HHS;
Program: Community Mental Health Services Block Grant Program;
Purpose: Provide mental health services to people with serious mental
illness.
Department: HHS;
Program: Comprehensive Community Mental Health Services for Children
with Serious Emotional Disturbances;
Purpose: Promote more effective ways to organize, coordinate, and
deliver mental health services and supports for youth up to age 22 and
their families.
Department: HHS;
Program: Medicaid--Medical Assistance Program, Title XIX;
Purpose: Improve access to health care for low-income individuals and
those in certain groups.
Department: HHS;
Program: Projects for Assistance in Transition from Homelessness;
Purpose: Provide mental health and related services to homeless
individuals with a serious mental illness.
Source: GAO analysis.
[End of table]
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.[Footnote 12]
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.[Footnote 13] 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.)[Footnote 14] 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.[Footnote 15]
Education and Employment-Related Programs:
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):
Table 2: Examples of Federal Programs That Can Provide Educational or
Employment-Related Services to Young Adults with Serious Mental
Illness:
Department: Education;
Program: Rehabilitation Services--Vocational Rehabilitation Grants to
States;
Purpose: Provide vocational rehabilitation services to persons with
disabilities who are interested in seeking employment.
Department: Education;
Program: Individuals with Disabilities Education Act, Part B, Grants to
States, Formula Grant Program;
Purpose: Provide special education and related services to children
with disabilities to ensure they have available a free appropriate
public education and to prepare them for further education, employment,
and independent living.
Department: HHS;
Program: Chafee Foster Care Independence Program;
Purpose: Help current and former foster care youth achieve self-
sufficiency through education, employment, financial management,
housing, counseling, and other support.
Department: HHS;
Program: Chafee Education and Training Vouchers Program;
Purpose: Provide vouchers to foster care youth adopted after age 16 or
certain former foster care youth through funds of up to $5,000 per year
for postsecondary education and training.
Department: Labor;
Program: Job Corps;
Purpose: Education and job training program for at-risk youth to
prepare them for stable, long-term employment.
Department: Labor;
Program: Workforce Investment Act (WIA) Youth Activities;
Purpose: Provide workforce training, educational activities, and
leadership development opportunities to low-income youth.
Department: Labor;
Program: YouthBuild;
Purpose: Provide disadvantaged youth with opportunities for employment,
education, leadership development, and training through the
construction and rehabilitation of permanent affordable housing for
homeless individuals and low-income families.
Source: GAO analysis.
[End of table]
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).[Footnote
16] 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.[Footnote 17] 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.
[Footnote 18]
Programs That Provide Housing Supports:
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.
Table 3: Examples of Federal Programs That Can Provide Housing Support
to Young Adults with Serious Mental Illness:
Department: HHS;
Program: Runaway and Homeless Youth Grant Program; Purpose:
Provide street-based educational and prevention services and outreach
to homeless and runaway youth who have been subjected to, or are at
risk of being subjected to, sexual abuse, prostitution, or sexual
exploitation.
Department: HUD;
Program: Public and Indian Housing;
Purpose: Provide and operate cost-effective, decent, safe, and
affordable dwellings for lower -income families.
Department: HUD;
Program: Section 8 Housing Choice Vouchers;
Purpose: Assist very low-income families to afford decent, safe, and
sanitary rental housing.
Department: HUD;
Program: Shelter Plus Care;
Purpose: Provide rental assistance to persons with disabilities
(primarily those with serious mental illness, chronic problems with
alcohol or drugs or both, acquired immunodeficiency syndrome, or
related diseases) and their families in connection with supportive
services funded from other sources.
Department: HUD;
Program: Supportive Housing Programs;
Purpose: Develop supportive housing and services that will allow
homeless persons to live as independently as possible.
Department: HUD;
Program: Supportive Housing for Persons with Disabilities;
Purpose: Allow very low-income persons with disabilities to live as
independently as possible in the community in affordable housing.
Source: GAO analysis.
[End of table]
More Than 2 Million Young Adults Have a Serious Mental Illness That Can
Affect Their Education and Employment:
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.
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:
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.[Footnote 19] 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.)
Figure 1: Estimated Prevalence of Mental Illness among Young Adults
Aged 18 through 26 in 2006, by Severity:
[See PDF for image]
This figure is a pie-chart depicting the following data:
No mental illness: 68.2%;
Moderate or mild mental illness: 25.3%;
Serious mental illness: 6.5%.
Source: GAO analysis of the National Comorbidity Survey Replication
(NCS-R), 2001-2003.
[End of figure]
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.[Footnote 20] 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.[Footnote 21] 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.[Footnote 22]
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.[Footnote
23] (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.[Footnote 24] 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.[Footnote 25]
Table 4: Estimated Prevalence of Commonly Diagnosed Mental Illnesses
among Young Adults Aged 18-26 with Serious Mental Illnesses:
Disorder (past 12 months): Intermittent explosive disorder;
Characterization of disorder: Discrete episodes of a failure to resist
aggressive impulses that result in serious violent acts or destruction
of property;
Percent with disorder[A]: 45.
Disorder (past 12 months): Major depressive disorder;
Characterization of disorder: Prolonged feelings of sadness,
worthlessness, or irritability, often accompanied by behavioral
changes, such as decreased energy or apathy;
Percent with disorder[A]: 32.
Disorder (past 12 months): Specific phobia;
Characterization of disorder: Irrational fear associated with a
specific object or situation;
Percent with disorder[A]: 32.
Disorder (past 12 months): Bipolar disorder[B];
Characterization of disorder: Mood swings ranging from high periods of
mania to low periods of severe depression;
Percent with disorder[A]: 28.
Disorder (past 12 months): Social phobia;
Characterization of disorder: Extreme anxiety in social situations;
Percent with disorder[A]: 28.
Disorder (past 12 months): Alcohol abuse;
Characterization of disorder: Pattern of repeated alcohol use resulting
in adverse consequences;
Percent with disorder[A]: 26.
Source: National Institutes of Health, DSM-IV, and GAO analysis of the
NCS-R, 2001-2003.
[A] All diagnoses were based on criteria specified in the DSM-IV for
mental disorders occurring within the past 12 months, and all estimates
are subject to a sampling error of within plus or minus 8 percentage
points, with the exception of intermittent explosive disorder (plus or
minus 13 percentage points), alcohol abuse and social phobia (plus or
minus10 percentage points). The NCS-R measured rates of mental illness
in U.S. households, and did not include individuals who are
institutionalized, incarcerated, or homeless.
[B] The NCS-R provides separate prevalence estimates for bipolar I and
bipolar II disorder. For the purposes of this analysis, we added the
estimates together to derive the prevalence of bipolar disorder
generally.
[End of table]
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.)
Figure 2: Rates of Education among Young Adults, Aged 18-26:
[See PDF for image]
This figure is a multiple vertical bar graph depicting the following
information:
Rate of education: graduated high school;
Serious mental illness: 64%;
Moderate or mild mental illness: 81%;
No mental Illness: 83%.
Rate of education: Postsecondary education;
Serious mental illness: 32%;
Moderate or mild mental illness: 46%;
No mental Illness: 51%.
Source: GAO analysis of the National Comorbidity Survey Replication
(NCS-R), 2001-2003.
Note: Differences in estimates of education between young adults with
serious mental illness and young adults with moderate, mild, or no
mental illness are statistically significant at the 5 percent
significance level and are subject to a sampling error of within plus
or minus 12 percentage points. The NCS-R measured rates of mental
illness in U.S. households and did not include individuals who are
institutionalized, incarcerated, or homeless.
[End of figure]
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.[Footnote 26] 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.[Footnote 27] (See app. IV for more detailed
demographics of young adults with serious mental illness compared to
those with moderate, mild, or no mental illness.)
About 186,000 Young Adults Had a Mental Illness So Severe That They
Received Disability Benefits from the SSA in 2006:
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.[Footnote 28] 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.)
Table 5: Estimated Prevalence of Mental Disorders among Young Adults
Aged 18-26 Receiving SSI or DI or Both Because of a Serious Mental
Illness:
Disorder: Affective mood disorders;
Percent with disorder: 46.
Disorder: Schizophrenic, paranoid, and other functional psychotic
disorders;
Percent with disorder: 33.
Disorder: Anxiety disorders;
Percent with disorder: 8.
Disorder: Personality disorders;
Percent with disorder: 5.
Disorder: Other mental disorders;
Percent with disorder: 8.
Source: GAO analysis of SSA's Ticket Research File, 2006.
Note: This analysis does not include those who receive disability
benefits because of abnormalities in cognition or intellectual
functioning, such as mental retardation or autism, or those whose
eligibility has not been redetermined after turning 18.
[End of table]
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.[Footnote 29] 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.)
Table 6: Estimated Education, Employment, and Income for Young Adults
Receiving SSI or DI Because of a Serious Mental Illness Compared to the
General Population of Young Adults with Serious Mental Illness:
Characteristic: Graduated high school;
SSI and DI recipients: 52%;
All with a serious mental illness: 64%.
Characteristic: Currently employed;
SSI and DI recipients: 15%;
All with a serious mental illness: 63%.
Characteristic: Average annual household income;
SSI and DI recipients: $20,685;
All with a serious mental illness: $45,667.
Source: GAO analysis of SSA's National Beneficiary Survey, 2004, for
estimates for SSI and DI recipients, and the National Comorbidity
Survey Replication (NCS-R), 2001-2003, for estimates of all young
adults with a serious mental illness.
Note: Our analysis of SSI and DI recipients does not include those who
receive disability benefits because of abnormalities in cognition or
intellectual functioning, such as mental retardation or autism. All
estimates are subject to a sampling error of within plus or minus 12
percentage points for estimates from the NCS-R and plus or minus 7
percentage points for estimates from the NBS.
[End of table]
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.[Footnote 30] 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.[Footnote 31] 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.
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:
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.
[Footnote 32] 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.[Footnote 33] 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.[Footnote 34]
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.
[Footnote 35]
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.[Footnote 36] 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.[Footnote 37]
Young Adults with Serious Mental Illness Face Challenges Accessing
Appropriate Support:
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.
Public Services Are Often Not Tailored to the Needs of Young Adults
with Serious Mental Illness:
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.[Footnote 38] 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.
[Footnote 39] 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.[Footnote 40]
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.[Footnote 41] 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.
[Footnote 42]
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.[Footnote 43] 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.
Differences in Eligibility Criteria between Child and Adult Systems
Pose Challenges:
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.[Footnote 44] 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.
[Footnote 45] 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.[Footnote 46] 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.
Navigating Multiple Programs and Systems Can also Present Challenges:
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.[Footnote 47] 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.[Footnote 48] 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.
Selected States Provide Multidimensional Services to Young Adults with
Serious Mental Illness Using Various Strategies:
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.
States We Visited Have Programs Providing Multidimensional Services to
Young Adults:
The four states we selected for review have developed programs that
provide multidimensional services to young adults with serious mental
illness.[Footnote 49] 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[Footnote 50]. 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.[Footnote 51] 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.)
States We Visited Use a Number of Strategies to Provide Services:
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.
Broadening Eligibility Criteria for Mental Health Services:
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.
Employing Evidenced-Based Practices:
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.[Footnote 52] In this model, team members collaborate to tailor
services on an individual basis, taking into account cultural
diversity.[Footnote 53] 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.[Footnote 54] 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.[Footnote 55]
Coordinating Services across State Agencies:
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.[Footnote 56] 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.[Footnote 57] They have some flexible funds for providing
additional multidimensional services, such as housing, tutoring, school
uniforms, and in-home respite care.
Leveraging Federal and State Funding Resources:
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[Footnote 58] 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.[Footnote 59]
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.[Footnote 60] 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.[Footnote 61]
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.[Footnote 62] When we conducted our site visit, the
provider was using 10 such vouchers to serve 20 to 30 young adults,
according to this provider.[Footnote 63] 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.[Footnote 64]
Involving Young Adults and Their Families:
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.
[Footnote 65] 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.
Federal Agencies Have Supported Demonstrations, Provided Technical
Assistance and Research, and Formed Interagency Working Groups:
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.[Footnote 66]
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:
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.[Footnote 67] 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.[Footnote
68] 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.
Federal Agencies Provide Technical Assistance and Fund Research:
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.[Footnote 69]
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.
[Footnote 70]
Federal Interagency Groups Are Beginning to Coordinate Mental Health
Services and Services for Youth in Transition and Youth with
Disabilities:
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.
Figure 3: Federal Coordination Efforts on Mental Health, Youth in
Transition, and Transitioning Youth with Disabilities:
[See PDF for image]
This figure is a table depicting the Federal Coordination Efforts on
Mental Health, Youth in Transition, and Transitioning Youth with
Disabilities, as follows:
Group: Federal Executive Steering Committee on Mental Health;
Target Population: Individuals with Mental Illness;
Goal: Implement recommendations of the President‘s New Freedom
Commission on Mental Health to better coordinate federal services;
Member Agencies:
DOD: Member agency;
DOJ: Member agency;
DOL: Member agency;
DOT: Member agency;
ED: Member agency;
HHS: Lead agency;
HUD: Member agency;
SSA: Member agency;
USDA: Member agency;
VA: Member agency.
Group: Shared Youth Vision Federal Collaborative Partnership;
Target Population: Transitioning Youth;
Goal: Strengthen communication and coordination among federal youth
serving agencies;
Member Agencies:
DOD: Not a member;
DOJ: Member agency;
DOL: Lead agency;
DOT: Member agency;
ED: Member agency;
HHS: Member agency;
HUD: Member agency;
SSA: Member agency;
USDA: Not a member;
VA: Not a member.
Group: Federal Partners in Transition Workgroup;
Target Population: Transitioning Youth with Disabilities;
Goal: Preparing youth with disabilities for employment;
Member Agencies:
DOD: Not a member;
DOJ: Member agency;
DOL: Lead agency;
DOT: Member agency;
ED: Member agency;
HHS: Member agency;
HUD: Not a member;
SSA: Member agency;
USDA: Not a member;
VA: Not a member.
Source: GAO analysis.
Note: National Council on Disability and U.S. Equal Employment
Opportunity Commission also participate in the Federal Partners in
Transition Workgroup. Corporation for National and Community Service
also participates in Shared Youth Vision Federal Collaborative
Partnership.
DOD = Department of Defense; DOT = Department of Transportation; VA =
Veterans Administration.
[End of figure]
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.[Footnote 71]
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.[Footnote 72] 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.
Concluding Observations:
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.
Response to Agency Comments:
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.[Footnote 73] 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 [hyperlink,
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.
Signed by:
Cornelia M. Ashby:
Director:
Education, Workforce, and Income Security Issues:
Signed by:
Cynthia A. Bascetta:
Director:
Health Care Issues:
[End of section]
Appendix I: Scope and Methodology:
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.
Data Analyses:
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.
The National Comorbidity Survey Replication:
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
[Footnote 74] 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.[Footnote 75] 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.[Footnote 76] 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.[Footnote 77] 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.[Footnote 78] All tests of statistical
significance were conducted at the 5 percent significance level for our
analyses.
Ticket Research File:
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.
[Footnote 79] We then analyzed several characteristics of those
individuals, including race, gender, primary and secondary disability,
and benefit type, using information in the database.[Footnote 80]
National Beneficiary Survey:
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.
Data Reliability:
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.
Literature Review:
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.
Interviews with Researchers and Mental Health Organizations:
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.
Site Visits:
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.
[End of section]
Appendix II: Federal Programs Identified by Bazelon as Helping Young
Adults with a Serious Mental Illness (SMI):
Department: Corporation for National and Community Service;
Program: Engaging Persons with Disabilities in National and Community
Services Grants.
Department: DOJ;
Program: Drug-Free Communities Support Program Grants.
Department: DOJ;
Program: Juvenile Justice and Delinquency Prevention State Formula
Grant.
Department: DOJ;
Program: Title V Community Prevention Grants Program.
Department: DOD;
Program: National Guard Youth ChalleNGe Program.
Department: Education;
Program: Elementary and Secondary School Counseling Program.
Department: Education;
Program: Federal Direct Student Loan and Family Education Loan
Programs.
Department: Education;
Program: Grants for the Integration of Schools and Mental Health
Systems.
Department: Education;
Program: Federal Perkins Loan Program.
Department: Education;
Program: Federal Supplemental Educational Opportunity Grants.
Department: Education;
Program: Federal Work-Study Program.
Department: Education;
Program: IDEA, Part B.
Department: Education;
Program: Independent Living Centers.
Department: Education;
Program: Pell Grants.
Department: Education;
Program: Safe and Drug Free Schools.
Department: Education;
Program: Transition Initiative.
Department: Education;
Program: Vocational and Adult Education State Basic Grants.
Department: Education;
Program: Vocational Rehabilitation: Supported Employment State Grants.
Department: Education;
Program: Vocational Rehabilitation, Title I Formula Grants.
Department: HHS;
Program: Adolescent Family Life Demonstration.
Department: HHS;
Program: Child Care Block Grant.
Department: HHS;
Program: Community Mental Health Services Block Grant.
Department: HHS;
Program: Community Services Block Grant.
Department: HHS;
Program: Comprehensive Community Mental Health Services for Children
and Their Families.
Department: HHS;
Program: Educational and Training Vouchers Program for Youths Aging out
of Foster Care.
Department: HHS;
Program: Health Care for the Homeless.
Department: HHS;
Program: Healthy and Ready to Work Initiative.
Department: HHS;
Program: John H. Chafee Foster Care Independence Program.
Department: HHS;
Program: Maternal & Child Health Block Grant.
Department: HHS;
Program: Medicaid.
Department: HHS;
Program: Partnerships for Youth in Transition.
Department: HHS;
Program: Projects for Assistance in Transition from Homelessness -
PATH.
Department: HHS;
Program: Runaway and Homeless Youth Act Programs.
Department: HHS;
Program: State Adolescent Substance Abuse Treatment Coordination.
Department: HHS;
Program: S-CHIP.
Department: HHS;
Program: Social Services Block Grant.
Department: HHS;
Program: Substance Abuse Prevention and Treatment Block Grant.
Department: HHS;
Program: Temporary Assistance for Needy Families.
Department: HHS;
Program: Title IV-B and Promoting Safe and Stable Families.
Department: HHS;
Program: Title IV-E - Payments for Children in Foster Care.
Department: HHS;
Program: Youth Transition Into the Workplace Grant.
Department: HHS/Education/DOJ;
Program: Safe Schools and Healthy Students Initiative.
Department: HUD;
Program: Community Development Block Grant.
Department: HUD;
Program: HOME Investment Partnership.
Department: HUD;
Program: Public Housing.
Department: HUD;
Program: Section 8 Housing Choice Vouchers.
Department: HUD;
Program: Shelter-Plus-Care.
Department: Labor;
Program: Job Corps.
Department: Labor;
Program: One-Stop Career Centers.
Department: Labor;
Program: Workforce Investment Act Youth Formula Grants.
Department: Labor;
Program: YouthBuild.
Department: SSA;
Program: SSI Disability Benefits.
Department: SSA;
Program: SSI Youth Transition Demonstration.
Department: SSA;
Program: Ticket-To-Work and Work Incentives Improvement.
Department: USDA;
Program: Special Supplemental Nutrition for Women, Infants and Children
(WIC).
Department: USDA;
Program: Food Stamps.
Department: USDA;
Program: American Conservation and Youth Service Corps.
Source: Moving On: Analysis of Federal Programs Funding Services to
Assist Transition-Age Youth with Serious Mental Health Conditions.
Judge David L. Bazelon Center for Mental Health Law. 2005.
[End of table]
[End of section]
Appendix III: Evidence-Based Practices Promoted by SAMHSA:
Evidence-Based Practice: Assertive Community Treatment;
Description: 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.
Evidence-Based Practice: Co-Occurring Disorders: Integrated Dual
Disorders Treatment;
Description: Integrated treatment for mental illness and substance
abuse addiction for people who have these co-occurring disorders.
Evidence-Based Practice: Family Psychoeducation;
Description: Involves a partnership among consumers, families, and
practitioners to learn ways to manage mental illness and reduce tension
and stress within the family.
Evidence-Based Practice: Illness Management and Recovery;
Description: Emphasizes helping people set and pursue personal goals
and implement action strategies in their everyday lives.
Evidence-Based Practice: Supported Employment;
Description: 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.
Source: SAMHSA.
Note: On its website, SAMHSA provides toolkits for these five evidence-
based practices. SAMHSA is also promoting and implementing research on
evidence-based practices in a number of other areas, such as supportive
housing and supported education, and plans on providing toolkits or
other informational materials for these as well.
[End of table]
[End of section]
Appendix IV: Demographic Characteristics of Young Adults Aged 18-26, by
Severity of Mental Illness, 2001-2003:
Demographic characteristic: Sex: Male;
Serious mental illness: 45% (34-56);
Moderate or mild mental illness: 43% (38-49);
No mental illness: 53% (49-58).
Demographic characteristic: Sex: Female;
Serious mental illness: 55% (44-67);
Moderate or mild mental illness: 57% (51-62);
No mental illness: 47% (42-51).
Demographic characteristic: Race: Caucasian;
Serious mental illness: 59% (47-72);
Moderate or mild mental illness: 68% (61-75);
No mental illness: 64% (59-70).
Demographic characteristic: Race: African-American;
Serious mental illness: 19% (11-27);
Moderate or mild mental illness: 11% (6-15);
No mental illness: 12% (8-16).
Demographic characteristic: Race: Hispanic;
Serious mental illness: 17% (10-24);
Moderate or mild mental illness: 16% (11-21);
No mental illness: 19% (15-23).
Demographic characteristic: Race: Other;
Serious mental illness: 5% (1-8);
Moderate or mild mental illness: 5% (2-9);
No mental illness: 5% (3-7).
Demographic characteristic: Region: Northeast;
Serious mental illness: 20% (11-28);
Moderate or mild mental illness: 16% (11-21);
No mental illness: 19% (12-27).
Demographic characteristic: Region: Midwest;
Serious mental illness: 26% (17-36);
Moderate or mild mental illness: 20% (15-26);
No mental illness: 21% (17-26).
Demographic characteristic: Region: South;
Serious mental illness: 34% (25-43);
Moderate or mild mental illness: 35% (26-44);
No mental illness: 33% (26-41).
Demographic characteristic: Region: West;
Serious mental illness: 20% (8-32);
Moderate or mild mental illness: 29% (16-41);
No mental illness: 26% (15-37).
Demographic characteristic: Marital status: Married;
Serious mental illness: 20% (13-28);
Moderate or mild mental illness: 25.5% (21-30);
No mental illness: 20% (16-23).
Demographic characteristic: Marital status: Not married;
Serious mental illness: 80% (72-87);
Moderate or mild mental illness: 74.5% (70-79);
No mental illness: 80% (77-84).
Demographic characteristic: Children: No children;
Serious mental illness: 71% (57-84);
Moderate or mild mental illness: 75% (69-81);
No mental illness: 81% (76-85).
Demographic characteristic: Children: One child or more;
Serious mental illness: 29% (16-43);
Moderate or mild mental illness: 25% (19-31);
No mental illness: 19% (15-24).
Demographic characteristic: Employment status: Employed;
Serious mental illness: 63% (52-75);
Moderate or mild mental illness: 68% (62-73);
No mental illness: 71% (67-75).
Demographic characteristic: Employment status: Unemployed or student;
Serious mental illness: 37% (25-48);
Moderate or mild mental illness: 32% (27-38);
No mental illness: 29% (25-33).
Demographic characteristic: Education: 0-11 years;
Serious mental illness: 36% (24-47);
Moderate or mild mental illness: 19% (15-23);
No mental illness: 17% (14-21).
Demographic characteristic: Education: 12 years;
Serious mental illness: 32% (24-40);
Moderate or mild mental illness: 35% (28-42);
No mental illness: 31% (25-38).
Demographic characteristic: Education: More than 12 years;
Serious mental illness: 32% (24-41);
Moderate or mild mental illness: 46% (39-54);
No mental illness: 51% (44-59).
Demographic characteristic: Health insurance: Insured;
Serious mental illness: 71% (61-81);
Moderate or mild mental illness: 73% (38-78);
No mental illness: 75% (70-80).
Demographic characteristic: Health insurance: Uninsured;
Serious mental illness: 29% (19-39);
Moderate or mild mental illness: 27% (22-32);
No mental illness: 25% (20-30).
Source: GAO analysis of the National Co-morbidity Survey Replication,
2001-2003.
Note: Numbers in parentheses are confidence intervals at the 95% level.
[End of table]
[End of section]
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:
Demographic characteristic: Sex: Male;
Among those with serious mental illness: 60%.
Demographic characteristic: Sex: Female;
Among those with serious mental illness: 40%.
Demographic characteristic: Race: Caucasian;
Among those with serious mental illness: 53%.
Demographic characteristic: Race: African-American;
Among those with serious mental illness: 29%.
Demographic characteristic: Race: Hispanic;
Among those with serious mental illness: 12%.
Demographic characteristic: Race: Other or missing data;
Among those with serious mental illness: 6%.
Demographic characteristic: Benefit type: SSI payment;
Among those with serious mental illness: 67%.
Demographic characteristic: Benefit type: DI payment;
Among those with serious mental illness: 9%.
Demographic characteristic: Benefit type: Both;
Among those with serious mental illness: 24%.
Results from the National Beneficiary Survey, 2004:
Demographic characteristic: Marital status: Married;
Among those with serious mental illness: 10% (6-13).
Demographic characteristic: Marital status: Not married;
Among those with serious mental illness: 90% (87-94).
Demographic characteristic: Employment status: Employed;
Among those with serious mental illness: 15% (10-19).
Demographic characteristic: Employment status: Not employed;
Among those with serious mental illness: 85% (81-90).
Demographic characteristic: Ever worked: Yes;
Among those with serious mental illness: 59% (53-66).
Demographic characteristic: Ever worked: No;
Among those with serious mental illness: 41% (34-47).
Demographic characteristic: Education: 0-11 years;
Among those with serious mental illness: 48% (41-55).
Demographic characteristic: Education: 12 years;
Among those with serious mental illness: 42% (36-48).
Demographic characteristic: Education: More than 12 years;
Among those with serious mental illness: 10% (7-13).
Demographic characteristic: Health insurance: Insured;
Among those with serious mental illness: 93% (89-96).
Demographic characteristic:Health insurance: Uninsured;
Among those with serious mental illness: 7% (4-11).
Source: GAO analysis of SSA's Ticket Research File, 2006, and National
Beneficiary Survey, 2004.
Notes: This analysis does not include those who receive disability
benefits because of abnormalities in cognition or intellectual
functioning, such as mental retardation or autism. Numbers in
parentheses are confidence intervals at the 95% level. Confidence
intervals do not apply to statistics derived from the Ticket Research
File, as they are true population values rather than estimates.
[End of table]
[End of section]
Appendix VI: Selected Programs States Can Use to Target or Provide
Comprehensive Services for Young Adults with SMI:
Program: Justice and Mental Health Collaboration Program;
Department: DOJ;
Description: 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.
Program: Disability Program Navigator Initiative;
Department: Labor;
Description: 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.
Program: Individuals with Disabilities Education Act Grants;
Department: Education;
Description: 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.
Program: Vocational Rehabilitation Grants to States;
Department: Education;
Description: 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.
Program: Rehabilitation Services Demonstration and Training Programs;
Department: Education;
Description: 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.
Program: Mental Health Transformation State Incentive Grant;
Department: HHS;
Description: This SAMHSA grant focuses on a state's infrastructure in
order to reduce fragmentation of services across systems.
Program: Real Choice Systems Change Grants for Community Living;
Department: HHS; Description: These CMS grants are specifically
intended to help states build the infrastructure that will result in
improvements in integrated community-based services.
Program: Comprehensive Mental Health for Children and Families;
Department: HHS;
Description: 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.
Program: Medicaid Buy-In;
Department: HHS;
Description: 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.
Program: Medicaid Rehabilitation Option;
Department: HHS;
Description: 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.
Program: Money Follows the Person;
Department: HHS;
Description: 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.
Source: GAO Analysis.
[End of table]
[End of section]
Appendix VII: Overview of Programs for Young Adults with SMI in Four
States:
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,[Footnote 81] 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.
[Footnote 82] 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.[Footnote 83] 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.[Footnote 84] 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.
[End of section]
Appendix VIII: Comments from the Department of Health and Human
Services:
Department Of Health & Human Services:
Office Of The Secretary:
Assistant Secretary for Legislation:
Washington, DC 20201:
June 11, 2008:
Ms. Cornelia M. Ashby, Director:
Education, Workforce, and Income Security Issues:
U.S. Government Accountability Office:
441 G Street, NW:
Washington, DC 20548:
Dear Ms. Ashby:
Enclosed are the Department's comments on the U.S. Government
Accountability Office's (GAO) draft report entitled: "Young Adults with
Serious Mental Illness: Some States and Federal Agencies are Taking
Steps to Address Their Challenges" (GAO 08-678).
The Department appreciates the opportunity to comment on this draft
report before its publication.
Signed by:
Jennifer D. Luong:
For:
Vincent J. Ventimiglia, Jr.
Assistant Secretary for Legislation:
Attachment:
General Comments Of The Department Of Health And Human Services (HHS)
On The Government Accountability Office's (GAO) Draft Report Entitled:
Young Adults With Serious Mental Illness: Some States And Federal
Agencies Are Taking Steps To Address Their Challenges (GAO-O8-678):
HHS appreciates the opportunity to review this GAO report. This is a
very pertinent and timely report, persons with some mental illnesses
are diagnosed when they are children and transitioning to adulthood and
aging out of certain systems can be a challenge for many.
The title may be more appropriately listed as "Young Adults with
Serious Mental Illness and Challenges in the Transition to Adulthood."
The current title seems to imply that the report will focus on all
types of challenges, the most pertinent of which can include their
actual symptoms, impairments, and the costs to the social support
system.
Role of Families:
The GAO has redefined the issues/questions and, therefore, has not
answered two of the objectives "(1) determine what is known about how
many seriously mentally ill or seriously emotionally disturbed young
adults are supported by their parents or grandparents and what are the
key federal programs to assist them, and (2) determine if there are
ways to reduce program overlap so that savings can be used to extend
eligibility beyond age 18. " There is almost no mention of families or
the role that families can play in supporting young adults, an issue
that is particularly important in the discussion of housing. For
example, the data from the Clark County Washington Partnerships for
Youth Transition (PYT) Grant showed that 60% of the youth were living
at home with family members.
Program Overlap:
Also GAO does not discuss ways to reduce program overlap which is
critically important because funding defines policy and practice. If
redundancies were to be identified that could be applied to this
population, this report would provide an important contribution. One of
the issues GAO highlights in the report is the narrower adult
eligibility criteria for mental health services, and how that can
eliminate receipt of needed services by individuals who have
significant support needs but don't meet the stringent criteria. In a
report sponsored by SAMHSA, Davis & Hunt (2005) state that adult mental
health administrators identified lack of funding as one of the greatest
barriers to improving services for young adults in their systems. Thus,
the effort to identify such potential funds is critically important.
Definition of Mental Illness:
Also, the GAO needs to better define mental illness in this report. The
GAO has not described the issue of Serious Emotional Disturbance (SEA)
vs. Serious Mental Illness (SMI), and has shifted to using ONLY the
terminology of SMI. Furthermore, SMI is not well defined. The report
describes the SAMHSA definition but doesn't use it in the analysis.
Instead the report uses what is termed to be the DSM-IV's definition of
mental illness. But DSM-IV doesn't define the term mental illness; it
defines mental disorder which includes ALL disorders in the DSM-IV. The
report then discounts cognitive disorders but not substance use
disorders (both should not be included in any definition of mental
illness). The report uses the NCS-R data to come up with a count,
acknowledges that it didn't include homeless, institutionalized or
incarcerated individuals, but doesn't mention that it didn't assess all
diagnoses that could be considered either a mental illness by their
definition or by SAMHSA's definition (the GAO excludes personality
disorders because the NCS-R didn't assess it).
We suggest you list the definition as indicated by Public Law 102-321
or consider using a term other than "serious" and defining exactly
which disorders are classified using the new terminology. We are
uncertain why substance use disorders would not fall into the category
"serious mental illness."
* Public Law 102-321 defines serious mental illness as the presence of
any Diagnostic and Statistical Manual of Mental Disorders (DSM) mental
disorder, substance use disorder, or developmental disorder that leads
to "substantial interference" with "one or more major life activities."
The diagnostic component of this definition was operationalized in the
NCS with CIDI diagnoses of 3 broad classes of 12-month DSM-III-R
disorders: mood disorders (major depression, dysthymia, bipolar
disorder), anxiety disorders (panic disorder, generalized anxiety
disorder, phobias, posttraumatic stress disorder), and nonaffective
psychoses (schizophrenia, schizophreniform disorder, schizoaffective
disorder, delusional disorder, brief psychotic disorder, and psychotic
disorder not otherwise specified).
Classification of the Population:
Throughout the document, the GAO should specify whether the
program/policy/research finding directly addresses this population or
if only indirectly (e.g. all adults with SMI or all transition age
youth with disabilities) so that it is clear to the reader what exactly
that program/policy/research has to offer. The GAO should include some
discussion about the issue of children being classified as having a SED
and adults, at age 18 and older, being classified as having a SMI, and
what that means. The report specifies it in the IDEA discussion, but
not for mental health agency discussion (but use some studies of youths
with SED). When the report uses more narrow/broad definitions, GAO
should mention that the term used in childhood in mental health and
education is "emotional disturbance", just to clarify that
documents/programs/language that involves ED is related to this issue.
Estimates of Assistance or Support:
In addition, the GAO was asked to provide "existing estimates of the
number who do not receive the assistance or support they need." This is
the crux of what is missing in this report. There is no estimate of
unmet need and, therefore, no explanation of why there is unmet need.
The report should address the fact that there is evidence (between
their poor outcomes and the journal article Davis and Sondheimer
published in 2006) that states do little in their adult mental health
system to address the needs of this population, and why that is the
case. Data in both that report and in a paper by Davis, Geller & Hunt,
2006, show that at least half of states adult mental health agencies
were offering no programs tailored to this age group (as of 2003). In
addition it is a difficult task for states to cobble together Federal
programs that could address the needs of this population, and that
those funds are currently used to address the needs of some other
vulnerable group - so it means taking that away from that group in
order to address the needs of this group - this is difficult for states
to do without some encouragement and perhaps some incentives. Also the
report to CMHS by Davis (Pioneering Transition Programs) highlights
evidence that typical states struggle with how to address the needs of
this population (and why) as well as the factors that administrators
listed as problematic in addressing their needs.
The GAO report should state that young adults are at the middle and end
of a process of becoming an adult that starts before young adulthood in
adolescence. Systems have organized themselves into child and adult and
that has created a problem for young adults; they sometimes get dropped
out and they often find programs that are not tailored to their needs
because adult services are typically focused on full adulthood, not
young adulthood. The GAO could clarify that some of the issues which
arise from the transition age youth (TAY) literature (such as
eligibility issues). Some of the issues raised in states regarding the
young adult population directly stem from the recognition that some of
the challenges start before adulthood. Some of the issues faced by
young adults are defined by that immediately preceding period of life -
as alluded to when describing eligibility and "transitional youth". GAO
should acknowledge that improving services for transition age youth
will, by definition, improve services for young adults and that several
of the programs GAO reviewed are aimed at the transition period. Those
typically are focused on individuals who were involved in systems or
had illness as adolescents, and may not recognize newly ill young
adults.
Tic Report Back to Original Concerns:
Since the report offers concluding observations, the report should tie
the findings back to the original concerns - that this population isn't
finishing school (which should get them back to the transition issues),
they aren't adequately employed, and they are arrested much more
frequently. The report should acknowledge other research that has found
other outcomes that is not adequately addressed with the NCS-R. When
the GAO uses those findings to address outcomes it should be noted that
those in the worst circumstances (e.g. those that adult MH should
serve) would not have been picked up in the NCS-R.
Schizophrenia and Child-Serving Systems:
The disjunction between the stated intent of the report and the
findings presented, however, highlight the large gap that exists
between child- and adult-serving systems of care in terms of
populations served. Although the report mentions in several places that
the service eligibility criteria for adults are narrower than those for
children, nothing is said of the lack of experience and expertise in
providing care for individuals with schizophrenia within child-serving
systems.
Analyses of Social Security disability data presented in the report
reveal that schizophrenia is among the most prevalent diagnoses (33%)
among adults with disabling mental illnesses. In contrast,
schizophrenia is rare (4.7%) among those served by children's programs
(Greenbaum et al., 1996). The discrepancy does not result from a
difference in eligibility criteria but, rather, from the difference in
the typical age of onset of the disorder.
Because schizophrenia typically emerges in the late teens or early
adulthood, it is rarely seen in child-serving systems. Because the
expertise in the treatment of schizophrenia primarily resides within
adult-serving systems, young people with the disorder most often begin
their course of treatment within the adult system, bypassing children's
systems altogether. As the report correctly points out, although the
adult system may have the best expertise for treating schizophrenia, it
is not specifically designed to deal with young people and may hold
little appeal to those seeking care.
Recognition of the difference in diagnoses served by the two systems is
critical for ensuring that proposed solutions will adequately address
the goals of transitional services. In the introductory sections of the
report, GAO specifically mentions how difficult transition can be for
young adults with schizophrenia. Yet, the methodology for reviewing
programs that serve youth in transition is heavily weighted toward
youth who were previously served by children's systems rather than
those with newly emerging and debilitating illnesses in young
adulthood. Indeed, the National Comorbidity Survey-Replication used to
determine estimates of mental illness for this age group does not even
include schizophrenia among diagnoses examined. The researchers and
mental health organizations interviewed were heavily weighted to those
with expertise in childhood illnesses and included neither experts in
schizophrenia nor adult mental health primary consumer organizations.
[End of section]
Appendix IX: GAO Contacts and Staff Acknowledgments:
GAO Contacts:
Cornelia M. Ashby (202) 512-7215 or ashbyc@gao.gov:
Cynthia A. Bascetta (202) 512-7114 or bascettac@gao.gov:
Staff Acknowledgments:
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.
[End of section]
Selected Bibliography:
Bazelon Center for Mental Health Law. Moving On: Analysis of Federal
Programs Funding Services to Assist Transition-Age Youth with Serious
Mental Health Conditions. Washington, D.C.: 2005.
Burt, M., and others. Helping America's Homeless: Emergency Shelter or
Affordable Housing? Washington, D.C.: Urban Institute Press, 2001.
Casey Family Programs. Improving Family Foster Care: Findings from the
Northwest Foster Care Alumni Study. Seattle: 2005.
Clark, H. B., and others. "Partnerships for Youth Transition (PYT):
Overview of Community Initiatives and Preliminary Findings on
Transition to Adulthood for Youth and Young Adults with Mental Health
Challenges," 329-32. In The 20th Annual Research Conference
Proceedings: A System of Care for Children's Mental Health: Expanding
the Research Base, edited by C. Newman and others. Tampa: University of
South Florida, Louis de la Parte Florida Mental Health Institute,
Research and Training Center for Children's Mental Health, 2008.
Clark, H. B., and others. "Services for Youth in Transition to
Adulthood in Systems of Care." In The System of Care Handbook:
Transforming Mental Health Services for Children, Youth, and Families,
edited by B. A. Stroul and G. M. Blau. Baltimore: Paul H. Brookes,
forthcoming.
Clark, H. B., and others. "Transition into Community Roles for Young
People with Emotional or Behavioral Disorders: Collaborative Systems
and Programs Outcomes." Chapter 11 in Transition of Secondary Students
with Emotional or Behavioral Disorders: Current Approaches for Positive
Outcomes, Arlington, Va.: The Divisions of the Council for Exceptional
Children, 2004.
Consumer Quality Initiatives. Voices of Youth in Transition: The
Experience of Aging Out of the Adolescent Public Mental Health Service
System in Massachusetts: Policy Implications and Recommendations.
Dorchester, Mass.: Dec. 11, 2002.
Davis, M., and others. "Longitudinal Patterns of Offending During the
Transition to Adulthood in Youth from the Mental Health System." The
Journal of Behavioral Health Services and Research 31, no. 4 (2004):
351-66.
Davis, M., J. Geller, and B. Hunt. "Within-State Availability of
Transition-to-Adulthood Services for Youths with Serious Mental Health
Conditions." Psychiatric Services 57, no. 11 (2006): 1594-99.
Davis, Maryann. "Improving Youth Transitions Systems and Measuring
Change." Paper, National Partnerships for Youth in Transition Forum,
Center for Mental Health Services, Massachusetts, August, 2005.
Davis, Maryann. Pioneering Transition Programs: The Establishment of
Programs That Span the Ages Served by Child and Adult Mental Health.
Rockville, Md.: Substance Abuse and Mental Health Services
Administration, Center for Mental Health Services, 2007.
Davis, Maryann, and Nancy Koroloff. "The Great Divide: How Mental
Health Policy Fails Young Adults" Research in Community and Mental
Health 14 (2006): 53-74.
Davis, Maryann, and Diane L. Sondheimer. "State Child Mental Health
Efforts to Support Youth in Transition to Adulthood." Journal of
Behavioral Health Services and Research 32, no. 1 (2005): 27-42.
Davis, Maryann, and Ann Vander Stoep. The Transition to Adulthood among
Adolescents Who Have Serious Emotional Disturbance. Prepared for The
Delmar, New York, National Resource Center on Homelessness and Mental
Illness Policy Research Associates. Rockville, Md.: Center for Mental
Health Services, Substance Abuse and Mental Health Services
Administration, April 1996.
Deschenes, N., H. B. Clark, and J. Herrygers. "Evaluating Fidelity of
Community Programs for Transition-Age Youth," 137-39. In The 21st
Annual Research Conference Proceedings: A System of Care for Children's
Mental Health: Expanding the Research Base, edited by C. Newman and
others. Tampa: University of South Florida. Louis de la Parte Florida
Mental Health Institute, Research and Training Center for Children's
Mental Health, 2008.
Doornbos, Mary Molewyk. "The 24-7-52 Job: Family Caregiving for Young
Adults with Serious and Persistent Mental Illness." Journal of Family
Nursing 7, no. 4 (2001): 328-44:
Doornbos, Mary Molewyk. "Family Caregivers and the Mental Health Care
System: Reality and Dreams." Archives of Psychiatric Nursing 16, no. 1
(2002): 39-46.
Greenbaum, P. E., and others. "National Adolescent and Child Treatment
Study (NACTS): Outcomes for Children with Serious Emotional and
Behavioral Disturbance." Journal of Emotional and Behavioral Disorders
4, no. 3 (1996): 130-46.
Haber, M. G., and others. "Predicting Improvement of Transitioning
Young People in the Partnerships for Youth Transition Initiative:
Findings from a Multi-Site Demonstration." Journal of Behavioral Health
Services and Research, forthcoming.
Hines-Martin, V., and others. "Barriers to Mental Health Care Access in
an African American Population." Issues in Mental Health Nursing 24
(2003): 237-56.
Hines-Martin, Vicki P. "Environmental Context of Caregiving for
Severely Mentally Ill Adults: An African American Experience." Issues
in Mental Health Nursing 19 (1998): 433-51.
Horwitz, Allan V. and Susan C. Reinhard. "Ethnic Differences in
Caregiving Duties and Burdens among Parents and Siblings of Persons
with Severe Mental Illnesses." Journal of Health and Social Behavior
36, no. 2 (1995): 138-50.
James, D. and L. Glaze. Mental Health Problems of Prison and Jail
Inmates. Special report prepared by the Bureau of Justice Statistics,
U.S. Department of Justice. Washington, D.C.: 2006.
Johnson, Eric D. "Differences among Families Coping with Serious Mental
Illness: A Qualitative Analysis." American Journal of Orthopsychiatry
70, no. 1 (2000): 126-34.
Karpur, A. H. B. Clark, P. Caproni, and H. Sterner. "Transition to
Adult Roles for Students with Emotional/Behavioral Disturbances: A
Follow-Up Study of Student Exiters from Steps-to-Success." Career
Development for Exceptional Individuals 28, no. 1 (2005): 36-46.
Kaye, Steve. Employment and Social Participation among People with
Mental Health Disabilities. San Francisco: National Disability
Statistics and Policy Forum, 2002.
Kessler, R., and others. "The Prevalence and Correlates of Serious
Mental Illness (SMI) in the National Comorbidity Survey Replication
(NCS-R)." In Mental Health, United States, 2004, edited by R. W.
Manderscheid and J. T. Berry. DHHS Publication (SMA)-06-4195.
Rockville, Md.: Substance Abuse and Mental Health Services
Administration, 2006.
Kessler, R., and others. "Prevalence, Severity, and Comorbidity of 12-
Month DSM-IV Disorders in the National Comorbidity Survey Replication."
Archives of General Psychiatry 62 (2005): 617-27.
Kessler, R., and others. "Prevalence and Treatment of Mental Disorders,
1990 to 2003." The New England Journal of Medicine 352, no. 24 (2005):
2515-23.
Mays, Gloria D. and Carole L. Lund. "Male Caregivers of Mentally Ill
Relatives." Perspectives in Psychiatric Care 35, no. 2 (1999): 19-28.
National Collaborative on Workforce and Disability for Youth, Institute
for Educational Leadership. Tunnels & Cliffs: A Guide for Workforce
Development Practitioners and Policymakers Serving Youth with Mental
Health Needs. Number E-9-4-1-0070. Washington, D.C.: March 2007.
New Freedom Commission on Mental Health. Achieving the Promise:
Transforming Mental Health Care in America: Final Report. DHHS
Publication SMA-03-3832. Rockville, Md.: 2003.
Pilowsky, Daniel J. and Li-Tzy Wu. "Psychiatric Symptoms and Substance
Use Disorders in a Nationally Representative Sample of American
Adolescents Involved with Foster Care." Journal of Adolescent Health 38
(2006): 351-58.
Rose, L., R. K. Mallinson and L. D. Gerson. "Mastery, Burden, and Areas
of Concern among Family Caregivers of Mentally Ill Persons." Archives
of Psychiatric Nursing 20, no. 1 (2006): 41-51.
Rose, Linda. "Caring for Caregivers: Perceptions of Social Support."
Journal of Psychosocial Nursing and Mental Health Services 35, no. 2
(1997): 17-24.
Shufelt, Jennie L. and Joseph J. Cocozza. Youth with Mental Health
Disorders in the Juvenile Justice System: Results from a Multi-State
Prevalence Study. Delmar, N.Y.: National Center for Mental Health and
Juvenile Justice, 2006.
Smiley, Amy, and Alysia Pascaris. A Chance for Change: Supporting Youth
in Transition in New York City: A Report on the Findings of the 2006-
2007 Youth Initiative Work Group. New York: Coalition of Behavioral
Health Agencies, 2007.
Styron, T. H., and others. "Troubled Youth in Transition: An Evaluation
of Connecticut's Special Services for Individuals Aging Out of
Adolescent Mental Health Programs." Children and Youth Services Review
28, no. 9 (2006): 1088-101.
Unger, J., and others. "Homeless Youths and Young Adults in Los
Angeles: Prevalence of Mental Health Problems and the Relationship
between Mental Health and Substance Abuse Disorders." American Journal
of Community Psychology 25 (1997): 371-94.
Vander Stoep, Ann. "Through the Cracks: Transition to Adulthood for
Severely Psychiatrically Impaired Youth," 357-68. In The 4th Annual
Research Conference Proceedings, A System of Care for Children's Mental
Health: Expanding the Research Base, edited by A. Algarin and R.
Friedman. Tampa: University of South Florida, Florida Mental Health
Institute, Research and Training Center for Children's Mental Health,
1992.
Wagner, Mary M. "Outcomes for Youths with Serious Emotional Disturbance
in Secondary School and Early Adulthood." The Future of Children 5, no.
2 (1995): 90-112.
Wagner, Mary and Maryann Davis. "How Are We Preparing Students with
Emotional Disturbances for the Transition to Young Adulthood? Findings
from the National Longitudinal Transition Study--2." Journal of
Emotional and Behavioral Disorders 14, no. 2 (2006): 86-98.
[End of section]
Related GAO Products:
GAO, Disconnected Youth: Federal Action Could Address Some of the
Challenges Faced by Local Programs That Reconnect Youth to Education
and Employment, [hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-08-
313] (Washington, D.C.: Feb. 28, 2008):
GAO, Residential Treatment Programs: Concerns Regarding Abuse and Death
in Certain Programs for Troubled Youth, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?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,
[hyperlink, http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?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,
[hyperlink, http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink, http://www.gao.gov/cgi-
bin/getrpt?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, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink, http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink, http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink, http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink, http://www.gao.gov/cgi-bin/getrpt?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,
[hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-04-683] (Washington,
D.C.: June 4, 2004):
GAO, Child Welfare: Improved Federal Oversight Could Assist States in
Overcoming Key Challenges, [hyperlink, http://www.gao.gov/cgi-
bin/getrpt?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, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?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,
[hyperlink, http://www.gao.gov/cgi-bin/getrpt?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,
[hyperlink, http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?GAO-03-397] (Washington, D.C.: Apr.
21, 2003):
GAO, Medicaid and SCHIP: States Use Varying Approaches to Monitor
Children's Access to Care, [hyperlink, http://www.gao.gov/cgi-
bin/getrpt?GAO-03-222 (Washington, D.C.: Jan. 14, 2003):
[End of section]
Footnotes:
[1] For purposes of this report, the term "mental illness" excludes
mental disorders that constitute abnormalities in cognition or
intellectual functioning, such as mental retardation, autism, or
Alzheimer's disease.
[2] All NCS-R and NBS estimates of the number and demographic
characteristics of young adults with serious mental illness are
presented with a 95 percent confidence interval. Unless otherwise
noted, the sampling error is within plus or minus 12 percentage points
for NCS-R estimates and within plus or minus 7 percentage points for
NBS estimates.
[3] These states are not considered representative of all states in the
manner and extent to which they assist young adults with serious mental
illness.
[4] In this report, transition-aged youth programs generally refer to
programs that include individuals aged 16 through 25, although programs
vary with some serving a broader age range.
[5] Mental disorders are diagnosed using criteria in the Diagnostic and
Statistical Manual of Mental Disorders--Fourth Edition (DSM-IV). Each
diagnosis, such as generalized anxiety disorder, major depressive
disorder, or schizophrenia, is based on a specific set of symptoms
reported over a given period of time. For example, major depressive
disorder can be diagnosed if an individual reports experiencing five or
more of seven specified symptoms, such as fatigue, feelings of
worthlessness or excessive or inappropriate guilt, and a diminished
ability to concentrate, over a minimum of 2 weeks.
[6] Those with mental health issues in childhood may be considered to
have a "serious emotional disturbance" defined as "persons from birth
up to age 18, 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 resulted in functional impairment which substantially
interferes with or limits the child's role or functioning in family,
school, or community activities." 58 Fed. Reg. 29422 (May 20, 1993).
The DSM-III-R predates the DSM-IV.
[7] Kessler, R., P. Berglund, O. Demler, R. Jin, K. Merikangas, and E.
Walters. "Lifetime Prevalence and Age-of-Onset Distributions of DSM-IV
Disorders in the National Comorbidity Survey Replication." Archives of
General Psychiatry 62 (2005): 593-602.
[8] Pub. L. No. 102-321, § 201. Mental Health Block Grant funding is
also targeted to children with a serious emotional disturbance.
[9] 58 Fed. Reg. 29422 (May 20, 1993). This report generally uses the
term "serious mental illness" based on SAMHSA's regulation. However, in
places throughout this report, we may use a slightly broader or
narrower conception of serious mental illness as necessitated by
available data as well as programmatic or administrative definitions.
[10] Individuals can also qualify if they can demonstrate that they
have a physical impairment that is expected to result in death.
[11] Individuals known as "disabled adult children" can also receive DI
benefits if they are aged 18 or older, were disabled before age 22, and
have at least one parent who also receives Social Security payments
because of retirement or disability or who is deceased but worked long
enough to be eligible to receive benefits.
[12] In most states, individuals receiving SSI are also eligible for
Medicaid.
[13] The 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. For GAO work that
addresses the rehabilitation option, see Medicaid Financing: States'
Use of Contingency-Fee Consultants to Maximize Federal Reimbursements
Highlights Need for Improved Federal Oversight, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?GAO-05-748] (Washington, D.C.: June
28, 2005).
[14] According to SAMHSA, these evidence-based practices have been
tested on the adult population, which included some young adults aged
18 through 30, but have not been systematically or empirically tested
specifically on the young adult population.
[15] For a GAO study related to SAMHSA's administration of mental
health programs, see Substance Abuse and Mental Health Services
Administration: Planning for Program Changes and Future Workforce Needs
Is Incomplete, [hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-04-
683] (Washington, D.C.: June 4, 2004).
[16] As defined by the Individuals with Disabilities Education Act, an
emotional disturbance is a condition exhibiting certain characteristics
over a long period of time and to a marked degree that adversely
affects educational performance. The characteristics include an
inability to learn that cannot be explained by intellectual, sensory,
or health factors and inappropriate types of behavior or feelings under
normal circumstances, among others.
[17] The Foster Care Independence Act also authorizes $60 million for
payments to states for postsecondary educational and training vouchers
for youth likely to experience difficulty as they transition to
adulthood after the age of 18.
[18] See GAO, Child Welfare: HHS Actions Would Help States Prepare
Youth in the Foster Care System for Independent Living, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?GAO-07-1097T] (Washington, D.C.: July
12, 2007).
[19] The sampling error for this estimate is plus or minus 1.2
percentage points.
[20] While estimates of the size of these populations exist, they are
for different years and are not all recent. The National Survey of
Homeless Assistance Providers and Clients estimated that between
124,000 and 236,000 individuals aged 20 through 24 were homeless in
1996. According to Bureau of Justice Statistics officials, about
222,000 young adults aged 18 through 24 were incarcerated in federal or
state prison in 2004, and about 177,000 were in local jails in 2002.
While the total number of institutionalized young adults is unknown,
one study found that the average number of individuals who were
institutionalized because of a mental illness on any day in 1992 was
nearly 84,000.
[21] Prevalence estimates may also be affected by the exclusion of non-
English-speaking households from the survey.
[22] Schizophrenia and nonaffective psychosis are characterized by an
inability to distinguish between what is real and what is imaginary.
Symptoms include delusions, hallucinations, extreme apathy, and social
withdrawal. According to NCS-R researchers, household surveys may
underestimate the prevalence of these disorders, because these
individuals may be less likely than those with other types of serious
mental illness to live at home or be less willing to participate in a
survey. However, to the extent that they do live at home, researchers
believe they are likely to be represented in the NCS-R estimates
because many are diagnosed with multiple mental disorders.
[23] The NCS-R provides separate prevalence estimates for bipolar I and
bipolar II disorder. For the purposes of this analysis, we add the
estimates together to derive the prevalence of bipolar disorder
generally.
[24] The NCS-R does not distinguish between primary and secondary
diagnoses.
[25] The sampling error for this estimate is plus or minus 13
percentage points. Drug abuse, drug dependence, alcohol abuse, and
alcohol dependence are all considered diagnosable mental illnesses in
the DSM-IV. In general, substance abuse is defined as the continued use
of a substance despite school-related or work-related or interpersonal
problems. Dependence is characterized by an increasing need for the
substance to achieve the desired effects as well as withdrawal symptoms
when the substance is not used.
[26] Steve Kaye. Employment and Social Participation among People with
Mental Health Disabilities. (San Francisco: National Disability
Statistics and Policy Forum, 2002).
[27] The President's New Freedom Commission on Mental Health, Achieving
the Promise: Transforming Mental Health Care in America: Final Report,
DHHS Publication SMA-03-3832 (Rockville, Md.: 2003).
[28] Individuals are not eligible to receive SSI or DI benefits for a
drug or alcohol addiction that is material to the disability
determination; however, some individuals with a substance-related
disorder may be eligible because of another disability.
[29] Those receiving SSI or DI are encouraged to participate in the
Ticket to Work program, an employment program administered by SSA that
provides rehabilitation opportunities and support for disabled
individuals to return to work without automatically losing their cash
benefits and health care coverage.
[30] As a result, many people may need another adult's help when
applying for or while receiving benefits. In fact, nearly 68 percent of
SSI recipients with a serious mental illness in 2006 had a
representative payee who received the payments on their behalf, and
just over half of these payees were parents or other relatives.
[31] Secondary diagnosis is defined as the most significant diagnosis
in terms of severity following the primary diagnosis.
[32] D. Pilowsky and L.T. Wu, "Psychiatric Symptoms and Substance Use
Disorders in a Nationally Representative Sample of American Adolescents
Involved with Foster Care," Journal of Adolescent Health 38 (2006): 351-
58.
[33] See Casey Family Programs, Improving Family Foster Care: Findings
from the Northwest Foster Care Alumni Study (Seattle, WA: 2005).
[34] In this study, respondents were classified as having a mental
health problem if they met one of several conditions--for example, if
they reported that they had been receiving treatment or been
hospitalized for mental or emotional problems or if they reported that
a mental health condition was the single largest factor keeping them
from getting out of homelessness. See M. Burt and others, Helping
America's Homeless: Emergency Shelter or Affordable Housing?
(Washington, D.C.: Urban Institute Press, 2001) 157.
[35] J. Unger and others, "Homeless Youths and Young Adults in Los
Angeles: Prevalence of Mental Health Problems and the Relationship
between Mental Health and Substance Abuse Disorders," American Journal
of Community Psychology 25 (1997): 371-94.
[36] In this study, respondents were classified as having a mental
health problem using two measures: a recent history or symptoms of a
mental health problem within the past 12 months. A recent history
included a clinical diagnosis or treatment by a mental health
professional. Symptoms of a mental disorder were based on criteria
specified in the DSM-IV. See James, Doris J. and Glaze, Lauren E.
Mental Health Problems of Prison and Jail Inmates, a special report
prepared by the Bureau of Justice Statistics, September 2006.
[37] Mental health disorders were identified using the Diagnostic
Interview Schedule for Children--Voice Version IV, a structured
interview designed to measure over 30 psychiatric diagnoses common
among adolescents. Severe mental illnesses were those that met criteria
for certain severe disorders that required significant or immediate
treatment or resulted in hospitalization. See Jennie L. Shufelt and
Joseph J. Cocozza, Youth with Mental Health Disorders in the Juvenile
Justice System: Results from a Multi-State Prevalence Study (Delmar,
N.Y.: National Center for Mental Health and Juvenile Justice, 2006).
[38] GAO, Disconnected Youth: Federal Action Could Address Some of the
Challenges Faced by Local Programs That Reconnect Youth to Education
and Employment, [hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-08-
313] (Washington, D.C.: Feb. 28, 2008).
[39] Consumer Quality Initiatives, Voices of Youth in Transition Report
the Experience of Aging Out of the Adolescent Public Mental Health
Service System in Massachusetts: Policy Implications and Recommendation
(Dorchester, Mass.: Dec. 11, 2002).
[40] Several mental health advocates have noted that it may also be
difficult for young adults to find culturally competent or
linguistically appropriate mental health care. The Surgeon General
noted in the 2001 report - Mental Health: Culture, Race, and Ethnicity
- A Supplement to Mental Health: A Report of the Surgeon General - that
racial and ethnic minorities have less access to mental health services
and are less likely to receive needed care.
[41] While vocational rehabilitation programs have been traditionally
used by those with physical, more than half of all persons who exit
these with an employment outcome have some type of mental impairment,
broadly defined. Within that broad category, in FY 2006, persons with
mental illness specifically comprised 31 percent of all vocational
rehabilitation applicants and represented 23 percent of all consumers
who exited with an employment outcome.
[42] SAMHSA is beginning to develop a resource guide on supported
education which is intended to help individuals with serious mental
illness begin or return to postsecondary education.
[43] SAMSHA, What a Difference a Friend Makes: Social Acceptance Is Key
to Mental Health Recovery, National Mental Health Anti-Stigma Campaign,
SMA 07-4257 (Washington, D.C.: March 2007) [hyperlink,
http://mentalhealth.samhsa.gov/publications/allpubs/SMA07257/default.asp
].
[44] National Conference of State Legislatures, A Difficult Passage:
Helping Youth with Mental Health Needs Transition into Adulthood,
Michelle Herman, (September 2006).
[45] Maryann Davis and Nancy Koroloff, "The Great Divide: How Mental
Health Policy Fails Young Adults," Research in Community and Mental
Health 14: 53-74.
[46] However, SSA officials noted that adults may be deemed eligible
for SSI or DI based on symptoms related to a disorder that qualified
them as children, even if the disorder itself did not.
[47] National Collaborative on Workforce and Disability for Youth,
Institute for Educational Leadership. Tunnels and Cliffs: A Guide for
Workforce Development Practitioners and Policymakers Serving Youth with
Mental Health Needs, Office of Disability Employment Policy E-9-4-1-
0070 (Washington, D.C.: March 2007).
[48] Judge David L. Bazelon Center for Mental Health Law, Moving On:
Analysis of Federal Programs Funding Services to Assist Transition-Age
Youth with Serious Mental Health Conditions (Washington, D.C.: 2005).
[49] With regard to states in general, research based on 2003 survey
data from 41 states and the District of Columbia found that one half of
state adult mental health systems offered some transition services, but
few provided any kind of transition service at more than one site. See
Davis, M., J. Geller, and B. Hunt. "Within-State Availability of
Transition-to-Adulthood Services for Youths with Serious Mental Health
Conditions" Psychiatric Services 57, no. 11 (2006): 1594-1599.
[50] State officials noted that their programs are culturally competent
because they take into account a participant's age, race, gender, and
culture.
[51] Connecticut's Department of Children and Families is responsible
for providing children and adolescents' behavioral health services,
juvenile justice and protection services.
[52] Individuals receiving Assertive Community Treatment services have
a variety of mental health impairments, such as difficulties with
basic, everyday activities like keeping themselves safe, caring for
their basic physical needs, or maintaining safe and adequate housing.
They may also struggle with unemployment, substance abuse,
homelessness, and involvement in the criminal justice system.
[53] Assertive Community Treatment team members are cross-trained in
each other's areas of expertise to the maximum extent feasible. The
team, which typically works with a relatively small number of
individuals, is available for support as long as the services are
needed.
[54] All 30 evidence-based programs can serve young adults, but six of
these are separate programs specifically designed for young adults aged
17 and above.
[55] The supported education counselor works closely with the state
adult and child mental health agencies and with youth formerly in
foster care or juvenile justice who are transitioning out of the child
mental health system.
[56] In addition to mental health agency officials, the Task Force
consists of officials from Mississippi's Department of Rehabilitation
Services; Department of Human Services (foster care); Mississippi
Families as Allies, a nonprofit advocacy organization for individuals
with mental illnesses and their families; and senior program staff from
the Transitional Outreach Program. This task force meets twice a year.
[57] Maryland also uses a team approach in local jurisdictions to
address transition issues of young adults receiving residential
services.
[58] Other health care services that can be provided under this option
include other diagnostic, screening, preventive, and rehabilitation
services and certain evidence-based practices such as Assertive
Community Treatment.
[59] Connecticut mental health officials told us that they have chosen
not to use the rehabilitation option to cover services associated with
the state's program for young adults with serious mental illness, but
they use it to cover other mental health services.
[60] Person-centered planning is an approach that emphasizes
individualized services and consumer choice in treatment.
[61] Some state mental health agencies provided grants to nonprofit
agencies that administer their young adult program to help pay for
services not covered by Medicaid.
[62] The Housing Choice Voucher program is authorized by section 8 of
the U.S. Housing Act of 1937, as amended (42 U.S.C. 1437f). Regulations
are found in 24 C.F.R. Part 982. HUD's Office of Public and Indian
Housing oversees the administration of the program.
[63] Local public housing agencies administer the Section 8 Housing
Choice Voucher program on HUD's behalf and provide eligible households
with a subsidy to seek and rent suitable housing in the private market.
These vouchers can be used in group homes for persons with serious
mental illness.
[64] One-Stop Centers provide employment training and placement to any
individual seeking work.
[65] The TIP System model is driven by seven guidelines or principles
that include but are not limited to engaging young people through
relationship development and person-centered planning, providing
developmentally appropriate services and supports, and teaching life-
skills. The model can be used as part of case management or in a team
format, such as Assertive Community Treatment. The TIP system is based
on research that includes outcomes. According to its author, the TIP
model is an "evidence-supported practice" based on the findings from
numerous outcomes studies. However, it has not been evaluated against a
control group using random clinical assignment. For details regarding
the TIP model, see [hyperlink, http://tip.fmhi.usf.edu] and Clark, H.
B. Transition to Independence Process System Development and Operations
Manual University of South Florida (Florida) 2004.
[66] In 2002, two executive orders highlighted issues concerning
fragmentation across mental health and youth-serving programs. These
executive orders created the President's New Freedom Commission on
Mental Health and the White House Task Force on Disadvantaged Youth.
[67] The grant also funded services for youth with serious emotional
disturbances.
[68] It should be noted that this evaluation lacked a control group
and, according to the researchers, improvements identified might be
explained by factors other than the program, such as attrition and
maturation effects, despite efforts to account for such factors in
their analyses. Also, the results are limited to the 193 program
participants for whom data were available and should be not generalized
to all program participants. M.G. Haber and others, "Predicting
Improvement of Transitioning Young People in the Partnerships for Youth
Transition Initiative: Findings from a Multi-Site Demonstration,"
Journal of Behavioral Health Services and Research, forthcoming.
[69] National Collaborative on Workforce & Disability for Youth,
Institute for Educational Leadership, Tunnels & Cliffs: A Guide for
Workforce Development Practitioners and Policymakers Serving Youth with
Mental Health Needs, Office of Disability Employment Policy Number #E-
9-4-1-0070 (Washington, D.C.: March 2007).
[70] SAMHSA has also developed as part of the Partnerships for Youth in
Transition demonstration, an age-appropriate outcome measurement tool
as well as a program fidelity instrument to assess how well programs
are implemented. According to HHS, the existence of such standardized
tools is a critical precursor to conducting randomized trails of the
model.
[71] SAMHSA launched "What a Difference a Friend Makes," as part of the
Mental Health Campaign for Mental Health Recovery, which is designed to
encourage, educate, and inspire people between 18 and 25 to support
their friends who are experiencing mental health problems.
[72] Job Corps, administered by Labor, is an education and job training
program for at-risk youth age 16 through 24.
[73] Kessler, R., W. T. Chiu, L. Colpe, O. Demler, K. Merikangas, E.
Walters, and P. Wang. "The Prevalence and Correlates of Serious Mental
Illness (SMI) in the National Comorbidity Survey Replication (NCS-R)."
In Mental Health, United States, 2004, ed. R.W. Manderscheid and Berry,
J.T. DHHS Pub No. (SMA)-06-4195. Rockville, Maryland: Substance Abuse
and Mental Health Services Administration, 2006.
[74] Respondents were determined to have a serious mental illness if
they met any of the following criteria within the previous 12 months:
made a serious suicide attempt; experienced a work disability or other
substantial limitation because of a mental or substance disorder; or
were diagnosed with bipolar I or II disorder, nonaffective psychosis,
substance dependence with serious role impairment, impulse control
disorder with repeated serious violence, or any disorder that resulted
in 30 or more days functioning out of role in the year.
[75] We used weights specific to part 2 of the NCS-R for estimates of
severity.
[76] According to the CPS, the population of 18-26--year-olds increased
by about 7 percent from 2001 to 2006, from approximately 34.6 million
to 37 million.
[77] The survey was administered in two parts. Part 1 contained a core
diagnostic assessment while part 2 contained questions pertaining to
specific behaviors, risk factors, and severity of mental illness. All
respondents who met lifetime criteria for a mental illness in part 1
participated in part 2, as well as a probability subsample of those
with no mental illness.
[78] Because the NCS-R employed a probability procedure based on random
selections, the selected sample was only one of a large number of
samples that might have been drawn. Since each sample could have
provided different estimates, we express our confidence in the
precision of the particular sample's results as a 95 percent confidence
interval (e.g., plus or minus 12 percentage points). This is the
interval that would contain the actual population value for 95 percent
of the samples that could have been drawn. As a result, we are 95
percent confident that each of the confidence intervals in this report
will include the true values in the study population.
[79] Mathematica Policy Research, Inc. developed these groupings as
part of its evaluation of the Ticket to Work Program. Because we define
"mental illness" to exclude mental disorders that constitute
abnormalities in cognition or intellectual functioning, we excluded
individuals whose primary disabling condition was listed as mental
retardation, autistic disorder, other pervasive development disorders,
organic mental disorders (chronic brain syndrome), or somatoform
disorders. We also excluded eating and tic disorders and substance
abuse disorders.
[80] In determining primary and secondary disabilities, we excluded SSI
recipients who began receiving benefits as children and had not yet
been redetermined by SSA under adult eligibility criteria. According to
our analysis, this applied to about 32 percent of the total SSI
population aged 18-26. DI recipients are not subject to the
redetermination process.
[81] Other state agencies that collaborated in the development of this
program are the Office of Policy and Management and the Department of
Mental Retardation.
[82] The levels of care are based on the young adults' clinical needs
and are generally geared to help them develop increasing levels of
independence and success in the community. Young adults receiving
mental health services can access various levels of care during their
recovery, depending on their clinical needs.
[83] Basic case management services consist of office-based and
outreach visits on a monthly, biweekly, or weekly basis. The highly
structured programs include: the specialized apartment program,
designed for those that require staff in the apartment for nearly all
day; group homes, which are congregate residential programs where
individuals develop life skill, and specialized residential services
programs with staff and supervision usually 24 hours a day seven days a
week. A Connecticut mental health official told us that Connecticut
primarily uses intensive case management, which is similar to the
Assertive Community Treatment model, but does not meet all the criteria
for Assertive Community Treatment, including having a psychiatrist
available 24 hours a day seven days a week.
[84] See Davis, Maryann and Ann Vander Stoep. The Transition to
Adulthood Among Adolescents Who Have Serious Emotional Disturbance,
prepared for The National Resource Center on Homelessness and Mental
Illness Policy Research Associates, Inc. Delmar, New York: under
contract to the Center for Mental Health Services, Substance Abuse and
Mental Health Services Administration, April 1996; and Davis, Maryann.
"Improving Youth Transitions Systems and Measuring Change."
Presentation at the National Partnerships for Youth in Transition
Forum, Center for Mental Health Services, Massachusetts: August 2005.
[End of section]
GAO's Mission:
The Government Accountability Office, the audit, evaluation and
investigative arm of Congress, exists to support Congress in meeting
its constitutional responsibilities and to help improve the performance
and accountability of the federal government for the American people.
GAO examines the use of public funds; evaluates federal programs and
policies; and provides analyses, recommendations, and other assistance
to help Congress make informed oversight, policy, and funding
decisions. GAO's commitment to good government is reflected in its core
values of accountability, integrity, and reliability.
Obtaining Copies of GAO Reports and Testimony:
The fastest and easiest way to obtain copies of GAO documents at no
cost is through GAO's Web site [hyperlink, http://www.gao.gov]. Each
weekday, GAO posts newly released reports, testimony, and
correspondence on its Web site. To have GAO e-mail you a list of newly
posted products every afternoon, go to [hyperlink, http://www.gao.gov]
and select "E-mail Updates."
Order by Mail or Phone:
The first copy of each printed report is free. Additional copies are $2
each. A check or money order should be made out to the Superintendent
of Documents. GAO also accepts VISA and Mastercard. Orders for 100 or
more copies mailed to a single address are discounted 25 percent.
Orders should be sent to:
U.S. Government Accountability Office:
441 G Street NW, Room LM:
Washington, D.C. 20548:
To order by Phone:
Voice: (202) 512-6000:
TDD: (202) 512-2537:
Fax: (202) 512-6061:
To Report Fraud, Waste, and Abuse in Federal Programs:
Contact:
Web site: [hyperlink, http://www.gao.gov/fraudnet/fraudnet.htm]:
E-mail: fraudnet@gao.gov:
Automated answering system: (800) 424-5454 or (202) 512-7470:
Congressional Relations:
Ralph Dawn, Managing Director, dawnr@gao.gov:
(202) 512-4400:
U.S. Government Accountability Office:
441 G Street NW, Room 7125:
Washington, D.C. 20548:
Public Affairs:
Chuck Young, Managing Director, youngc1@gao.gov:
(202) 512-4800:
U.S. Government Accountability Office:
441 G Street NW, Room 7149:
Washington, D.C. 20548:
