State child mental health efforts to support youth in ...

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State Child Mental Health Efforts to Support Youth in Transition to Adulthood Maryann Davis, PhD Diane L. Sondheimer, MSN, MPH, CPNP Abstract The ability of state child mental health (MH) systems to facilitate the transition to adulthood of adolescents in their systems was studied by interviewing members of the Children, Youth and Families Division of the NationaI Association of State Mental Health Program Directors (NASMHPD). Results demonstrated that transition services within the state child M H systems are sparse, nationally. Continuity of services as youth age into adulthood is hampered because of generally separate child and adult MH systems, each with separate policies defining who accesses those services, lack of clarity about procedures to access adult M H services, and lack of shared client planning between adult and child M H systems. These findings suggest that adolescents in state child M H systems have difficulty accessing services that will help them with the difficult task of learning to function as an adult. Public M H systems should examine their capacity to provide transition supports and make needed improvements.

There is growing concern about the well being of adolescents with serious emotional disturbance (SED) as they transition to adulthood, particularly those who have received public child services. There are approximately 1 to 3 million youth with SED in the United States who are transition-aged (14-25 years old).l Longitudinal studies have provided ample evidence that adolescents with SED served by state child mental health (MH) systems or in special-education services fare poorly in the tasks of young adulthood (eg, references 1-7).There is also evidence that these poor outcomes result in part from nonintervention or nonsupport. Studies of service utilization after youth age out o f children's systems indicate that few of these youth access any services even when they want them. 8-1° In general, young people and their parents report that services that could support their movement into adulthood are either not available, or are not appealing. H' 12 While no treatment or service has met criteria for "probably efficacious" or "well established ''13 for this age group, Clark and colleagues 14 have summarized characteristics shared by programs nominated as "good" that provide transition supports to these youth. On the basis o f these findings, Clark and colleagues developed system o f care guidelines for transition-aged youth with SED.15 Testimonials from young people in these types of programs are impressive. 16 A growing number of studies have also consistently found functional improvement among youth participating in programs that are consistent with these transition system o f care guidelines. 16-2°

Address correspondence to Maryann Davis, PhD, assistant professor, Center for Mental Health Services Research, Department of Psychiatry, University of Massachusetts Medical School, 55 Lake Ave, Worcester, MA 01655. E-mail: [email protected]. Diane L. Sondheimer, MSN, MPH, CPNP, is the deputy chief at the Child, Adolescent and Family Branch, Center for Mental Health Services, Rockville, Md.

Journal of Behavioral Health Services & Research, 2005, 32(1), 27-42. @ 2005 National Council for Community Behavioral Healthcare.

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Taken together, these studies indicate (1) that many youth with SED need assistance in making the transition to adulthood, (2) that there is considerable knowledge about the types of programs that appeal to this population (with initial indications of positive outcomes), but (3) there are barriers of access to high-quality programs and approaches. 21 While there is clear justification for concern about the needs of the transitioning population and how systems address these needs, there has been no assessment of children's systems' efforts to address the transition needs of adolescents with SED. Adolescents with SED are found in all public child systems, and many adolescents with psychiatric disorders receive no mental health services at all. 22-24 Describing transition support services available to all adolescents with SED in all systems is a daunting task. A reasonable starting place is state child MH systems. State child M H systems here refers to the part of the (1) state mental health authority (SMHA) that has administrative oversight of child MH services or (2) consolidated state child agency that has administrative oversight of child MH services. State child MH systems are the only child systems focused solely on children with MH needs. More than 443,000 children and youth with SED are served in state child MH systems (not including nonreporting states or consolidated child system-based states; National Association of State Mental Health Directors' National Research Institute FY01; http://nri.rdmc.org/profiles01/Report01.cfm). All adolescents in this system have significant, and often the most serious, mental health needs. Other child systems, such as special education, child welfare, and juvenile justice systems, serve youth with SED, but the target population for their services are more broadly defined. Thus, transition-support innovations from state child MH systems could be a critical resource for the development and dissemination of programs, strategies, and technical assistance to improve transition supports targeted at adolescents with SED in all systems. The system of care guidelines developed by Clark and colleagues 15 provide a framework from which to evaluate transition support services. Briefly, these guidelines recommend that adolescents have access to supports for all domains of transition functioning, including (but not limited to) independent living, school, and vocational/career supports starting in adolescence and lasting as long as youth need them. Evaluation of the extent to which the transition support systems within state child MH systems are consistent with these guidelines was done by interviewing members of the Children, Youth and Families Division of the National Association of State Mental Health Program Directors (NASMHPD). Division members are the lead state-level administrators of the state's child MH system. Qualitative findings from this interview, including examples of many of the findings presented in aggregate form here, were previously published by NASMHPD's National Technical Assistance Center. 25

Methods Participants All members of the NASMHPD Child, Youth and Families Division, or their designees, for the 50 US states and the District of Columbia participated in the interviews. These participants are herein referred to as administrators.

Procedures Interviews were conducted by the first author between March and June 2001. Interviews lasted 45 to 90 minutes. This work was sponsored in part by NASMHPD, and the authors worked with their National Technical Assistance Center in contacting members. Administrators were sent a cover letter, introducing the issue and the purpose of the study, and guidelines concerning the interview, including the interview instrument. These materials defined transition services as services that focus

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on assisting young people with SED to complete the tasks of adolescence and take on the mantle of adulthood. Typical transition programs were described as offering supports in the following areas: (1) completing high school or earning a Graduate Equivalent Diploma; (2) entering and completing postsecondary education or training; (3) obtaining and maintaining rewarding employment; (4) preparing for and achieving independent living; (5) developing and maintaining adult social support networks; (6) obtaining age-appropriate MH services and supports; and (7) participating in transition planning and coordination of transition services and supports. Answers were recorded live, by hand, and answers to open-ended questions were paraphrased. The interviewer checked the accuracy of her paraphrasing during the interview when she thought that it might be inaccurate, which usually occurred when the point was unclear or the answer was lengthy. Paraphrased responses were coded into categories by the first author and then summarized in an aggregate form using descriptive statistics. All reported percentages are based on a denominator of 51 (50 statesplus the District of Columbia), unless otherwise noted.

Instrument Administrators were interviewed using a semistructured questionnaire (http://www.nasmhpd.org/ general_fileslpublications/ntac_pubslreports/Transitions.PDE Appendix A). Questions for the inter-

view were developed from topics that the literature suggests are important for youth in transition to adulthood.l, 14,26 These included the evaluation of critical elements from the current guidelines for transition support systems15: (1) did adolescents have access to supports for all domains of transition functioning, including (but not limited to) independent living, school, and vocational/career supports, (2) was transition planning done, and (3) were these supports available starting at age 14 and lasting as long as youth needed them. Efforts that would facilitate progress toward these goals were also assessed, such as the presence of work groups focused on this issue, and policies, contract language, or legislation consistent with these guidelines.

Assessing reporting limitations Two reporting limitations emerged during the interviews. In some states, administration of the child MH system was decentralized, and administrators reported that there could be local transition support services and efforts that they were unaware of (n = 5). In addition, some administrators (n = 4) reported that their states had a Medicaid-funded child MH system, operating through a private-managed behavioral healthcare organization (BHO) that served many adolescents, for which the MH agency had little administrative responsibility and little information about. Since the interview instrument did not address these issues, the interviews did not yield systematic findings regarding these limitations. To determine the impact of these limitations a systematic assessment of these configurations and their implications was done using NASMHPD Research Institute's State Mental Health Authority Profiling System from 2001 (http://nri.rdmc.org/Profiles.cfm). This system captures decentralization and private BHO administration of Medicaid waivers in all states except the 5 in which child MH was administratively housed outside the state MH authority (Connecticut, Delaware, Idaho, Nevada, Rhodes Island). None of the administrators from these 5 states reported difficulty in describing available transition services. Decentralized M H systems

County (single or multi) or city, rather than state-level, mental health authorities primarily administer and fund community MH systems in 12 states. Administrators from 7 of these states indicated that there could be transition programs they were not aware of, although each reported at least one transition program in their state. Administrators in the other 5 states expressed no reserve in their

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ability to report, and reported various transition programs in their states. One of these 5 states had a large Medicaid BHO carve out (see below). Private B H O systems Determining the likelihood of potentially unreported transition services offered through private Medicaid BHOs is a function of (1) their presence, (2) the size of the population served in the BHO, and (3) the role of the SMHA in relation to the BHO. Presence. Managed behavioral healthcare was present in 23 states, 21 of which accomplished this through Medicaid 1915(b) or 1115 waivers. The other 2 states managed other fund sources, such as state general funds, with managed behavioral healthcare within the SMHA system. Size of BHO population. Private BHOs were the administrators of Medicaid-funded MH services in 13 states. Four of these states' programs were not statewide. The ratio of the number of individuals receiving MH services from the waiver programs to those receiving from the SMHA was large in 5 states (4.84-78.77 times as large), roughly equal in 3 states (0.71-0.96), and small in 5 states (0.19--0.50). The role of the SMHA. Medicaid waivers can be administered through the SMHA, county or city mental health boards/agencies, community mental health agencies, or private-managed BHOs. State administrators would be expected to know about transition support services when the waivers are administered through the SMHA. Administration of Medicaid waivers through local MH board/ agencies would occur in the decentralized states described earlier. State administrators would be least likely to know about transition support services managed by private BHOs when the SMHA had little monitoring or administrative authority. There were no variables in the NASMHPD database to define the relationship between the SMHA and the private BHO, thus it is not clear in which states the administrator would be expected to be familiar with BHO-managed transition programs. It was clear from the interviews that the administrator from at least one state with a large private BHO was very familiar with transition support programs and contract language. However, conservatively, there could be unreported transition support services available through the BHOs in any of 13 states.

Items reported While the interview consisted of questions in 8 different areas, this article focuses on the following 4 areas: 1. Transition services provided and efforts made by the state's child MH system to serve youth with SED who were in the state child MH system; 2. Population policies that define eligibility criteria or definitions of target populations for child and adult MH services; 3. Efforts to link child and adult MH systems for the purpose of transition support; and 4. Interagency efforts to address transition needs that include the child MH system.

Results Efforts within child MH systems Transition services or programs offered by the child M H system Programs or services "offered" by child MH system were defined for administrators during the interview as efforts that received funding from the state's child MH agency and served adolescent clients of the child MH system. Services or programs funded by other systems that adolescents from the MH system might access, such as independent living support programs funded by child welfare, or programs that primarily served other populations, like programs for all special education students,

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Table 1 Transition support services offered by state child mental health systems, and the number of states reporting to offer that service in at least one site

Program type

Number of states

(1) Supervised or supported housing

22

(2) Specialized wraparound approaches

13

(3) Standard wraparound approaches (4) Vocational support

10

(5) Independent living preparation (6) Supported education

9

(7) Peer leadership/ mentoring (8) Transition specialist

3

(9) Assertive community treatment (10) Other

(11) No transition support services

11

2

1

2

12

Description Programs that provide assistance living in independent apartments, assistance living in congregate apartments, onsite staff support for congregate apartments, onsite staff supervising home with multiple clients (group home). Administrator-identified as "wraparound" that was in some way tailored to address transition needs at minimum, including specific transition planning rather than assuming that individualized planning would address transition needs. Administrator-identified as "wraparound" that was available to adolescents, but were in no way tailored for transition issues. Vocational assessment, counseling, or coaching, support groups, and transitional or supported employment. Training of independent living skills, and assistance with finding housing. Efforts focused on facilitating high school or college performance, attendance, and completion and/or graduate education diploma completion. Advocacy or leadership training for adolescent clients, or peer-mentoring programs. An individual who provided specialized knowledge about transition issues to professionals, systems, youth or families. Self-identified as Assertive Community Treatment model that served adolescents in child system. Two programs--a school-to-work program that encompassed both high school completion and vocational support, the other was a mental health clinic with a manual of how to work with the transition-aged population. Administrator indicates that, to the best of their knowledge, there are no transition support services offered anywhere.

were not recorded unless the child MH system provided funding. The programs also needed to focus on preparing adolescents for adulthood. Clinical programs that served this population that did not focus in some way on preparing them for adulthood were not included, such as standard adolescent outpatient therapy. Administrators described a total of 10 different types of transition support services available in their states. Table 1 provides the service type definitions and the number of states in which they were offered. The type of service offered by the largest number of states was some form of supported or supervised housing. Wraparound approaches were also common. Guidelines of

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Table 2 Availability of transition support services offered by state child mental health systems

Number of states offering in each capacity Type of service Supported or supervised housing Specialized wraparound Vocational support Standard wraparound Independent living training Supported education Any transition support service

None

1 area

Multiple areas

Statewide

29 38 40 41 42 44 12

11 6 7 2 0 6 7

10 5 4 5 2 1 23

1 2 0 3 7 0 9

good care with transition-aged youth 15 and analysis of developmentally appropriate application of wraparound principals 27 suggest that some modification of the standard wraparound process is needed for transition-aged youth. For example, the composition of community teams 28 needs to change to include adult agencies, and partnering with parents needs to change developmentally to partnering with the young person. Thus, when wraparound approaches were described, administrators were queried as to whether any modifications had been made to accommodate transition-age needs. The provision of standard wraparound services is included as transition support services because there was a strong perception among administrators that standard wraparound approaches could address transition needs. As can be seen in Table 1, implementing wraparound services developed specifically for older adolescents or using standard wraparound services with older youth and young adults were relatively common strategies. Peer leadership or mentoring, transition specialists, and Assertive Community Treatment teams were offered in the child MH systems of few states. Moreover, as can be seen in Table 1, each individual service type was available in fewer than half of states, and 12 states offered no transition support services. Table 2 shows the geographic availability, within each state, of the 6 most common types of services offered, which was coded into 4 categories--not at all, in one area, in multiple areas but not statewide, and statewide. A seventh category, "any transition services", referred to the presence of any of the 10 types of services. Generally, as can be seen in Table 2, few states offered any one type of service statewide. Independent living training was the most common statewide service (7 states). For example, Massachusetts reported having mandated the teaching of an independent living skills curriculum, developed by the child welfare system, to adolescents in all of their adolescent residential programs. While supported or supervised housing was available in the largest number of states (Table 1), it was only available statewide in 1 state (Table 2). For each type of service, the vast majority of states (n = 42-50) did not offer that type of service at all or offered it in only one area of the state. While almost half of states offered some kind of transition support in multiple sites ("any transition services"; Table 2), no single type of service was available in even half of states (Table 1), and 12 states offered no transition support services at all. Other transition support efforts

The Individuals with Disabilities Education Act (IDEA; PL105-17) mandates that MH agencies be involved in the transition planning that schools conduct when a child needs MH services to attain a transition goal (20 U.S.C. § 1414(d)(1)(A)(vii)). Administrators were asked about transition planning efforts that their systems made that were either elaborations of the IDEA planning process or independent of it. Table 3 presents the different types of transition planning efforts reported. In 8

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Table 3 Other transition support efforts within state child mental health systems*

Effort Transition system needs assessments Statewide assessment of adolescent MH system Local assessments of adolescent MH system Included as part of needs assessments of a broader population Transition planning Transition planning focused on the goals of adulthood Transition planning focused on process to enter adult MH services Child MH takes lead on IDEA transition planning Details unclear

Number of states 17 7 5 5 19

8 5 2 4

*MH indicates mental health; IDEA, Individual with Disabilities Education Act.

of the 19 states with transition planning, it was mandated or described in policy, legislative code, or contract language. The age at which transition planning was started was unclear for 10 states, of the remaining 9 states, 2 started at age 14 (the 2 that were closely tied to IDEA transition planning), 3 started at age 16, and 4 began at 17 or older. Table 3 also describes needs assessments that examined the ability of the child and/or adult MH system to provide transition supports. Several states had either conducted or been a part of needs assessments that focused on transition supports, within the mental health system, or within systems that included state child MH clients.

Population policies Administrators in all but 3 states reported significant differences in the criteria used to determine access to services between the child and adult MH systems (see Table 4). One (Maryland) of these 3 states had no difference in criteria except for accessing housing services. Another administrator said that their list of eligible diagnoses were generally not tied to ages and that eligibility was generally not a barrier in that state (Oregon). One state (Oklahoma) explicitly removed the barrier of having to meet new qualifications for the adult system by "grandfathering" adolescents' eligibility into adult eligibility. Once individuals were deemed eligible, they could continue to receive services until they no longer needed them. For adolescents transitioning to adulthood, this means that when they age out of the child MH system, they are automatically eligible for the adult system if services are still needed. In each of the remaining states, administrators reported that the child criteria were broader than the adult criteria. For example, in New Mexico, the poverty cutoff for Medicaid eligibility (through which much of their state mental health services were funded) was 235% of the federal poverty level for children and 100% for adults.

Age at which child MH services end Most states end child MH services at age 18 (see Table 4). In 12 of the 15 states that serve youth up to age 21, and the I state that served up to age 22, adult MH systems could begin serving youth at age 18. If an adolescent from the child MH system was attaining his 18th birthday there was some decision process to determine whether he would continue in child MH system or transfer to adult MH services. In these states, new clients aged 18 and older were only considered for the adult system using adult MH system population definitions.

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Table 4 Number of states (N = 50) with and without mechanisms related to bridging adult and child state mental health systems

Mechanism

Number of states

Population policies regulating access to services Adult definition narrower than child definition Comparable definitions or grandfathered into adult services Age at which child mental health services end 18 19 21 22 Continuous case management Adult and child case management completely separate Adult and child case management separate with rare exception Adult and child case management mixed Cross training of case managers Child and Adult Case managers trained together Focused transition training for child and adult case managers together

47 3 31 3 15 1 19 22 9 11 8

Linkages with adult M H Administrators were asked about linkages between state child and adult MH systems that could facilitate or hinder smooth transitions to adulthood for adolescents in the child MH system. One administrator (Arkansas) reported that at the time of the interview, there was no separate child MH system, thus none of the characteristics described below applied in this state, and it is not included in Table 4 (n = 50). Shared case management

Clark and colleagues 15 have suggested that one relatively inexpensive way to provide specialized supports to transitioning youth is for some case managers to develop expertise in the unique service needs of this population and to serve adolescent and young adult consumers throughout the transition period. However, when case management services for child and adult MH systems are separate, this specialization is difficult to achieve. Separate adult and child case management systems are also a barrier to continuity of case management as youth age from one system to the next. Few states had case managers that served both adolescents and adults statewide (see Table 4). Nearly every state that had separate adult and child case management "with rare exception" (see Table 4) had rural or frontier regions in which the level of staffing precluded separate case management, and were the sites of the rare exceptions to having separate child/adult case management. Resources were too scarce in these regions to allow for specialization, resulting in case managers wearing multiple hats (ie, serving both adult and child clients). Only one state (Kansas) reported having shared case management as a planned strategy to aid the transition process. In North Carolina, the state MH system provides one case manager for each family to help coordinate services for the entire family. Presumably, as a youth from the family enters adulthood, he or she can continue to work with the same case manager, providing an element of continuity.

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Programs that serve adolescents and adults Administrators were asked for the ages served in each categorical program they described from the state child MH system, or as part of the linkage with the adult MH system. Providing service continuity throughout transition ages of 14-25 years l° prevents the disruption of therapeutic and other fruitful relationships simply because youth have reached a specific birthday that signifies the necessity to meet new requirements to access services (see definition differences earlier). Thirteen states had 1 or 2 programs in 1 or 2 sites that could continue to provide transition services once youth crossed the age limitation of child MH services. Only Vermont was making a systematic effort, at the time of the interview, to provide a variety of transition supports to all youth from the child system to an older age throughout the state MH system, having already implemented it in 4 regions. Administrators described 2 strategies to fund these programs. Funding from child and adult systems were combined to provide continuous services for adolescents who either met or were expected to eventually meet adult eligibility criteria who could then enter the service at a young age (ie, 16) and continue into adulthood. Programs funded this way were usually adult programs extending their services to a younger population. Serving youth continuously regardless of meeting adult criteria usually resulted from supplementing child MH funding with alternative funding, such as private foundations. Programs funded this way were usually adolescent programs extending their services to older individuals.

Cross training Cross training referred to training that could lead to child and adult staff, case managers, or providers receiving training together on shared issues, about each other's systems or populations, or specifically about transition-related issues. Nineteen states offered some form of cross training (see Table 4). Most commonly, trainings were specifically about transition issues. Five of the 8 states that had provided specialized transition training had provided day-long or half-day conferences or workshops, focusing specifically on the transitioning population and service issues.

Interagency efforts This section focuses on collaborative efforts that were either headed by the state child or adult MH agency or efforts in which the MH agency participated (see Table 5).

Interagency agreements Either the adult or the child MH system in 16 states had entered into an interagency agreement, outlining areas of consensus about youth in transition. Most commonly, the agreements dealt with some specific process that included or focused on transition issues. Three (Connecticut, Rhode Island, Nevada) of the 4 states with interagency agreements focusing on the transfer of child clients to the adult MH system were from states with consolidated children's agencies that are separate from the adult MH agency. These consolidated child agencies had entered into agreements with the adult MH system regarding transfer of youth to adult MH services for those who qualify for adult services and continue to need supports. Connecticut's elaborate interagency agreement designates which agency is responsible for financing particular services, and establishes a liaison between the adult and child MH systems. This resulted in the development of new, specialized adult MH services. Vermont had an interagency agreement between state level mental health, corrections, and vocational rehabilitation agencies that outlined the operation and funding of the age-continuous transition program described earlier in 4 of the 7 geographic regions of the state.

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Table 5 Number of state child mental health systems involved in various interagency efforts that could facilitate transition supports Type of effort

Number of states

Interagency agreements Describes specific process that includes transition Transfer from child agency to adult mental health agency Broad agreement including transition issues Other Interagency committees Focused on youth with disabilities and on transition Focused on vulnerable or disabled youth, transition included Focused on youth with serious emotional disturbance and on transition Focused on youth with serious emotional disturbance, transition included Special efforts with school transition efforts

16 7 4 3 2 33 14 2 5 12 24

Interagency committees Administrators from 33 states reported that their child MH systems led or participated in interagency committees or subcommittees that address transition issues (Table 5). These committees varied on 2 dimensions: the focus on youth with SED and the focus on transition. Typically, non-SEDfocused groups were focused on all students with disabilities, and non-transition-focused groups included transition as a topic of interest (that's why it was being reported on), but that was not the focus of the group. Most commonly, administrators reported participating in the state's special education lead transition council (not focused on youth with SED, but focused on transition issues). On the other hand, many administrators reported that transition had become a topic of interest for that state's MH planning council (focused on SED but not on transition). The MH planning council is an interagency group that includes consumers and family advocates. It is mandated for any state receiving Community Mental Health Services Block Grants (Part B of Title XIX of the Public Health Service Act).

Coordination with schools on transition planning Child MH systems in 24 states reported making a special effort to collaborate with schools on transition planning, beyond participating in the state level school-focused transition councils (see above).

Overall effort To determine how many states had made some concrete effort to improve transition support services for youth in child MH systems, a composite dichotomous variable was constructed. States in which any of the following were true within the state child MH system received a 1; all others received a zero: 1. 2. 3. 4.

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there was any type of transition service or program a transition system needs assessment had been conducted some formal individual transition planning was conducted there was cross training with adult MH on transition issues

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5. child MH participated in interagency committees that include or focus on transition and youth with SED 6. there was a specific effort to coordinate with schools on transition planning. Using this composite score only 1 state reported none of these concrete efforts to improve transition supports for youth in the child MH system. Two states' child MH systems, in particular, have developed fairly comprehensive and focused transition supports that were widely available to adolescents in their systems (Nebraska, Vermont). Nebraska was the only state to address comprehensive transition needs statewide. All transition planning and supports in Nebraska were provided through its statewide wraparound process for youth up to the age of 21. Wraparound teams provided transition planning, and the administrator felt that they were able to find sufficient resources for youths' vocational and independent living needs. Nebraska's wraparound approach included specific transition planning and so it was considered a specialized wraparound approach, but the extent to which the community team or the partnering with parents had been altered was unclear (as described earlier in the section of "specialized" versus "standardized" wraparound services). There were also 3 important limitations to the transition support work in Nebraska. There was only one site with categorical transition support programs in the state, which could limit the ability of the wraparound approach to link youth with needed resources. Wraparound in Nebraska ends at age 21 without a comparable process being offered within the adult MH system. Finally, Nebraska is one of the states where their Medicaid MH services are administered through a private BHO. According to the Nebraska administrator, many more youths were served through the BHO than through the state's child MH agency. The Nebraska administrator reported that there were no Medicaid transition services. Overall, Nebraska was able to provide the wraparound process to the relatively small number (according to the administrator) of youths who were in wraparound services statewide as a way of developing transition plans, and accessing whatever transition support resources are available until youths reach age 21. The second state that widely provided a variety of transition supports was Vermont. The administrator from Vermont reported that all youth with SED in their multiple child-serving systems (including mental health, child welfare, juvenile justice, and special education) in 4 of their 7 geographic areas could access their vocationally focused wraparound model from ages 16-21, despite child MH services ending at age 18. The limitations were that they struggled to provide appropriate housing services and that there was no similar service counterpart in the adult MH system for youth older than 21 years.

Discussion This discussion is focused on the status of transition supports available within state MH systems, and particularly on state child MH systems and the adolescents served in that system. This includes more than 443,000 children and youth with SED served in state child MH systems (not including nonreporting states) in FY01 (NASMHPD's National Research Institute). It does not include transition support services that those adolescents might access through other child- or adult-serving systems. Current guidelines for transition support systems for youth with emotional or behavioral difficultieslS'16suggest that adolescents should have access to supports for all domains of transition functioning, including (but not limited to) independent living, school, and vocational/career supports. Furthermore, these supports should be available starting in adolescence and lasting as long as youth need them and that transition planning should be done to help identify transition goals, and needs and approaches to attain the goals. The current findings indicate that far from the possibility of accessing comprehensive transition supports, most adolescents in state child MH systems have access to nonde or few types of transition supports from that system. These findings also corroborate the testimonials and reports by youth and

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parents that they find few appealing transition supports. 9,12,13,23 Furthermore, there is little guarantee of continued support once youth reach the upper age limit for child MH systems, which for most states is the age of 18. Generally, because of eligibility differences, no state has found a way to continue to provide MH services to all youth in the child MH system who continue to need them when they have reached the age only served by adult MH. Many administrators reported that their eligibility, or target or priority population definition, was based on the federal definitions of SED for children and serious mental illness (SMI) for adults established by the Center for Mental Health Services (Section 1911(c) and 1912(c), respectively, of the Public Health Service Act; PL102-321; FR, 58(96). E 29422). These administrators also reported that their adult definition was narrower than their child definition. Careful analysis of the Child MH system definitions reveals similar definitions of SED and SMI. Both use the same language to describe the diagnostic criteria: "These disorders include any mental disorder (including those of biological etiology) listed in DSM-III-R or their ICD-9-CM equivalent (and subsequent revisions) with the exception of DSM-III-R 'V' codes, substance use, and developmental disorders, which are excluded, unless they co-occur with another diagnosable serious emotional disturbance [serious mental illness]. All of these disorders have episodic, recurrent, or persistent features; however, they vary in terms of severity or disabling effects." (p29425). The only implicit diagnostic difference would be age limitations in the applications of various diagnoses, such as with antisocial personality disorder requiring the age of 18. Functional impairment definitions are different for SED and SMI. Child functional impairment is described as "... difficulties that substantially interfere with or limit a child or adolescent from achieving or maintaining one or more developmentallyappropriate social, behavioral, cognitive, communicative, or adaptive skills. Functional impairments of episodic, recurrent, and continuous duration are included unless they are temporary and expected responses to stressful events in their environment. Children who would have met functional impairment criteria during the referenced year without the benefit of treatment or other support services are included in this definition" (p. 29425). Whereas adult functional impairment is defined as "... difficulties that substantially interfere with or limit role functioning in one or more major life activities including basic daily living skills (eg, eating, bathing, dressing); instrumental living skills (eg, maintaining a household, managing money, getting around the community, taking prescribed medication); and functioning in social, family, and vocational/educationalcontexts. Adults who would have met functional impairment criteria during the referenced year without benefit of treatment or other support services are considered to have serious mental illnesses." The functional definitions, although different, are not obviously narrower in the SMI definition. Thus, it may be that the interpretation of the 2 definitions results in a more restrictive adult definition, or that administrators were simply inaccurate in their views of how well the 2 definitions lined up in their state. The pervasiveness of the report that eligibility or target population definition differences are a major barrier to care continuity during the transition stage suggests that this is an important area for future investigation. Child and adult MH systems have also been generally unsuccessful in engaging together to provide continuing transition support services, even for those children who will qualify for adult services. Administrators generally expressed a high level of frustration about their efforts to address the transition needs of their population. Although several expressed understandable pride in their states' accomplishments, none were complacent about the status quo. They uniformly recognized the need to expand on their successes. It is, however, noteworthy that with only one exception, each state child MH system was at least discussing the need to improve transition services. Most states' child MH systems provided at least some formalized preparation for adulthood for some of their adolescent clients. This provides each state child MH system some local expertise from which they can expand. Pooling the knowledge

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across child MH systems in all states and the District provides an extraordinary knowledge base that could be shared.

Limitations There are significant limitations to the findings of this study stemming from the methodology. Paraphrasing and coding of respondents' answers to open-ended questions into categories was done only by the first author. There were no reliability checks. The information categorized was relatively simple--categorization of programs into service types, categorization of "other efforts" into meaningful categories. However, validity and reliability of categories, and accuracy of paraphrasing would have been strengthened by recording a sample of interviews and using multiple individuals to paraphrase and code responses. The availability of services was measured by administrator report, which is limited in several important ways. While administrators received the questions in advance, only one reported having gone through any formal process to obtain the requested information other than to include additional administrators who might have more specific information in the interview. Therefore, the answers should be considered to reflect their working knowledge about their systems, which may underrepresent transition support efforts. Overall, the lack of reporting a categorical service does not guarantee that it was, in fact, not offered. Administrator reports from highly centralized states, where the state directly provides or contracts with providers for services, are likely most accurate. However, as noted in the methods section, the presence of undetected transition support services in the child MH system is likely in the 7 states in which there is significant local autonomy in shaping services and little opportunity for state-level administrators to track these local programs. In the 5 additional states with decentralized administration and funding of community MH services, in which administrators expressed no reserve in their ability to report the presence of transition programs, procedures may have existed to keep state-level administrators informed. For example, Washington reported that funding went to local authorities who then funded and administered community MH services, but that each authority reported back to the state what they had funded. However, again, there is likely to be more underreporting than in highly centralized MH systems. Thus, there may have been numerous unreported transition support services within the state child MH system in these states. In fact, one of the advantages of decentralization is that it can lead to local innovation, thus it is likely that some transition support efforts in those locales were unreported. However, it is unlikely that decentralization results in overall transition support efforts that are greater than in more centralized states. Only one administrator (Nebraska) from decentralized states reported the broad availability of transition supports. It is unlikely that transition supports were widely available in other decentralized states without the lead child MH administrator being aware of that. Thus, the general conclusion that state child MH systems lack sufficient transition support services is reasonable. This study did not attempt to catalogue the availability of transition support services available to youth with SED through other child-serving systems or through private Medicaid BHOs. Many, but not all, youth from state child MH systems are involved with other systems. With rare exception, for those youth involved only with the child MH system, the findings from this study indicate that their transition needs are largely unaddressed. This study does not shed direct light on the availability of transition supports in other systems for youth from child MH systems. The research literature from other child systems indicates either poor young adult outcomes among youth with SED in their systems, 2 or provides no evidence of transition support services for this particular group or their particular young adult functioning. These lines of evidence suggest that transition supports in these systems are not sufficient to meet the needs of this population, and that the transition needs of youth from child MH systems are not well addressed across the child and adult service system.

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This study also sheds no direct light on the provision of transition support services through the private Medicaid BHOs in 13 states. Of particular interest would be the 8 states in which the size of the BHO child population is about the same or larger than the state child MH system. Analysis of transition support efforts for youth with SED in other child-serving systems or in states with large private Medicaid BHO's would provide a complete picture of the transition support system, and potential innovations from other systems. These findings, then, demonstrate that state child MH systems are attempting to improve their transition support services, but they have a long way to go before adolescent clients and their families can count on the availability of comprehensive, age-appropriate, and appealing services throughout the transition stage.

Implications for Behavioral Health Two national task forces on the transition needs of youth with SED have made specific recommendations for improving transition support services. 21 One underlying theme emerges: little progress is made when the issue is not prioritized. Prioritization of the transition issue can be easily sidetracked. Child MH providers need to address the immediate needs of adolescents and their families, and can easily lose sight of the fact that these youth will become legal adults shortly. By the same token, adult MH systems can become so focused on their traditional clients--adults aged 30 and older with long histories of chronic and serious mental illness that they lose sight of the very different and challenging needs of young adult consumers. As several administrators in the current study pointed out, this "background noise" will always be present. If transition supports for youth in child MH systems are to progress, it needs to become a priority for both MH systems despite this noise. Increasing the priority of transition issues can be accomplished through several means. At the state or local level, awareness of the issue can be increased by holding conferences or trainings with key stakeholders that clarify its importance and invites input into the next steps. Since advocacy has played such an important role in the progress thus f a r y advocacy organizations and young people can be invited to partner in developing a plan to prioritize this issue. Systems should partner closely with young people to ensure the relevance and appeal of transition efforts. Those for whom transition is a priority can be mobilized to help make change. Toward this end, transition advocates can be found within child and adult MH and within other systems, including child welfare, education, juvenile justice, and vocational rehabilitation agencies. Task forces can be developed to identify needs, resources, and barriers. Existing databases and data resources can be examined for their relevance in describing transition issues. If they currently do not collect any relevant data, some key variables can be added for future needs, or a needs assessment can be initiated to help focus where work is most needed. Stories that can highlight the poignancy and importance of the issue in currency that appeals to each relevant audience can also be gathered and shared. Addressing transition issues should involve conversations with all involved parties at all levels to find out what their concerns and desires are (ie, focus groups of youth in transition, of their families, of direct care providers, of state agency administrators, etc). Funding, in combination with prioritizing transition, appears to be vital to progress, z6 Davis and colleagues 26 summarized the fiscal barriers that programs face, which required combining various funding sources, and concluded that the tremendous difficulty in securing funding is a significant barrier to the development and availability of programs for youth in transition. States that had made notable progress had secured new funding for those initiatives, rather than simply shifting resources from other services. These states had also retained the funding through focused effort: presenting outcomes of the programs, continuing to raise awareness about transition-related issues, and protecting funding from being shifted to other efforts. Protecting funding usually involved monitoring for any changes in the funding source (eg, legislative budgets) and presenting arguments to keep the funding from being spent on other efforts. Several approaches can enhance funding:

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(1) take advantage of opportunism--new or unexpected influxes of funds that are not already encumbered or claimed; (2) start small--any funding dedicated to this issue lays the foundation for further funding; (3) blend or combine funding with other agencies that share concern and population, such as child welfare independent living programming for adolescents involved with both systems or adult MH targeted at adolescents who will enter adult services; (4) if there are preexisting interagency child-funding efforts, work toward adding adult agencies and focusing on a shared population (ie, extending wraparound); (5) join with partners in advocating for increased funding from potential sources, such as legislatures and federal entities; (6) analyze any untapped resources for transition support (eg, several states have used Early Prevention, Screening, Diagnosis, and Treatment [EPSDT] funds to extend services from ages 18 to 21). Lastly, system fragmentation needs to be addressed at both state and federal levels. The arbitrary application of "adult" status to various ages in combination with major differences between child and adult systems in eligibility criteria, practices, areas of expertise, and cultures has added to the challenge of bridging the 2 systems for better transition supports.

Acknowledgments The authors thank Janice Robert for her tireless persistence in scheduling appointments, and the Children, Youth and Families Division members of the National Association of State Mental Health Program Directors (NASMHPD)for their time. This study was funded by a subcontract from NASMHPD's National Technical Assistance Center, under contract to the Center for Mental Health Services of the Substance Abuse and Mental Health Services Administration.

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