NTAC'S Newsletter "networks"

Winter 1998/1999

MESSAGE FROM NTAC'S DIRECTOR

In this issue of networks, we address the transition of young people from the child and adolescent mental health to the adult mental health services systems. This is a greater challenge than many of us realize. As the lead article points out, this group has some unique needs: balancing growing independence with continuing needs for family support, developing basic life skills, obtaining their first independent housing and employment, pursuing educational and career planning.

The child and adult service delivery systems and they often are, for all intents and purposes, two separate systems tend to operate in very different ways. Skills developed in negotiating through the former do not necessarily successfully translate to the latter. So, in this issue we explore this transition and the problems and challenges it presents through the eyes of Yati Florida, a young woman who has much to teach us all about structuring systems and services in ways that meet the needs of the people they are designed to serve. Successfully meeting those needs produces lifelong benefits. Not meeting them creates difficulties that may take a lifetime to overcome. The choice is ours.

On another note, I am pleased to announce that NTAC has received three years additional funding from the Center for Mental Health Services, through a Cooperative Agreement with the National Association of State Mental Health Program Directors (NASMHPD), to continue its work with state mental health agencies, consumers, family members and state mental health planning and advisory councils. We would like to thank, especially, members of NTAC's Oversight Committee for their continued guidance and support. (Highlights of the recent meeting that took place in Alexandria, VA are found on page 11.) The twenty-three organizations that provided letters of support and cooperation also helped proposal reviewers fully understand the collaborative nature of the NTAC venture. Last, though certainly not least, our thanks go to the CMHS Division of State and Community Systems Development, through Director Dr. Joyce Berry, Branch Chief Al Byrd and Project Officers Marie Danforth and Velva Spriggs. It is our pleasure to work with them.

This is an exciting and challenging time for us. Having just completed a full evaluation survey of NTAC's products and services, we look forward to continuing, expanding and refocusing NTAC's technical assistance activities through 2001. We will be strengthening those products and services that survey respondents told us they find valuable, refining or adding some others and discontinuing a few that didn't meet your needs or our expectations.

That continual self-assessment is in the nature of the business of providing technical assistance support to public mental health systems in their efforts to bring about long-term systems change. We appreciate your assistance with this effort and will be happy to provide a copy of the full evaluation report upon request.

-Bruce D. Emery, M.S.W.



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From Adolescence to Adulthood: Transition Services To Help Youth Build a Better Future

by John D. Kotler, M.S.J.

Between the ages of 8 and 18, Yati Florida [name and story used with permission] lived with nine different foster families and in three group homes in and around Columbus, Ohio. Despite her high intelligence and academic bent, Yati (pronounced Yay-tie) dropped out of school in the ninth grade. Her abuse of alcohol and drugs often led to trouble with the police. Diagnosed with "aggressive-explosive behavior” and bipolar disorder at age 14, Yati was later arrested when she attacked a policeman who was attempting to take her into custody. She told the judge that she heard voices while in jail. Rather than return her to detention this time, the judge sent her to a children's hospital at a coeducational inpatient facility known as the Buckeye Boys Ranch outside of Columbus.

While in the hospital, Yati was visited by Kim Terhlen, a case manager with the Transitional Community Treatment Team at North Central Mental Health Services of Franklin County, Ohio. The transition team, Ms. Terhlen explains, helps young people with emotional and behavioral difficulties make the transition from adolescence to adulthood. Although Yati was still under the auspices of children's mental health services, she said, the transition team would keep in touch with children's services to monitor her progress. Once she turned 17, she would be eligible to receive services directly from the transition team.

"My first thought was that somebody outside thinks I'm crazy," Yati recalls. "I didn't like that. But at the same time, it was a relief to hear that some services were available. I was so afraid of turning 18. I was afraid of children's services letting me go, and I'd just be out there in the world on my own."

Now 21, Yati Florida looks back on that period of her life with a sense of pride and perspective, especially in view of what she has accomplished in the intervening years. She no longer uses drugs and alcohol, she maintains her own apartment and a job, she is studying at a community college to become a medical lab technician and she has renewed a relationship with her mother after a long separation. Yati recalls the turmoil of her teenage years and the important role that staff members of the North Central Transitional Team played in helping her negotiate the troubled waters of her youth. "It was great to know they were there," she says. [See "Focus on the States".]

Yati was fortunate to be involved in one of the small but growing number of mental health programs that focus specifically on youth who are making the transition from adolescence to adulthood. It is widely acknowledged that youth and young adults with emotional and behavioral difficulties need a variety of well coordinated mental health services and supports during the transition stage that may include treatment for co-occurring mental illness and substance use disorders, housing, education, job training, career planing, improvement of family relationships, and life and social skills development. Yet there are relatively few places around the country where such intensive case management of services is available to youth in transition.

The lack of transition services stems both from barriers built into the mental health system and a shortage of funding, notes Maryann Davis, Ph.D., of the Department of Psychiatry at the University of Massachusetts in Worcester and Director of Project Nexus, a transition program serving youth in five suburban Boston communities.

Dr. Davis points out that children's mental health systems generally have a strict age limit often age 18 after which they can no longer provide services. Yet many young people with emotional and behavioral difficulties do not meet the diagnostic criteria for receiving services from the adult mental health system.

Underlying these problems, Dr. Davis asserts, is a lack of funding for transitional services. In many cases the public children's and adult mental health systems barely have enough money to meet the needs of their primary populations. In part, the problem is that there are many more children and adults requiring mental health services and supports at any given time than there are youth in transition. Therefore, most resources are earmarked for categorical programs for children and adults not for individuals who are in between the two systems.

Yet Dr. Davis points out that all young people with emotional and behavioral difficulties must make the transition from childhood to adulthood at some point in their lives and that the lack of effective services has a serious impact on their prospects for success. At a time when many young people are enthusiastically setting out for college, the military or other traditional transitional settings, youth with emotional and behavioral difficulties are often at risk of falling through the gaps of the public mental health system into unemployment, homelessness and involvement with the juvenile and criminal justice systems.

"Youth and young adults with emotional and behavioral challenges have some of the poorest outcomes of all disability groups," explains Hewitt B. "Rusty" Clark, Ph.D., Professor and Director of the Transition to Independence Process (TIP) Evaluation at the Department of Child and Family Studies of the Florida Institute of Mental Health at the University of South Florida in Tampa.

"They are not achieving employment, and they are not going on to postsecondary education, which would allow them to move to better paying jobs and have more career options." Dr. Clark says, "More than 50 percent of these youth and young adults are being incarcerated at great cost to our states and communities." [See networks, Spring 1998, for more information on mental health and the criminal justice system.]

Youth with emotional and behavioral difficulties also have much higher rates of homelessness than others in their age group. "Up to one-third experience a period of homelessness," Dr. Davis says. These youth are also less likely than their peers to live with their families and more likely to become pregnant.1

Dr. Clark emphasizes that effective transition programs can make the difference between whether youth flounder during this period or move ahead to lead fulfilling adult lives. "Our own work and research on transition programs in Florida and around the country suggest strategies that can be effective in working with youth and young adults in transition," he states.

Dr. Clark and other researchers at the University of South Florida have developed an innovative approach to services and supports for youth and young adults known as the Transition to Independence Process (TIP), which has been used as a model for transition programs around the country. [See page 6 for more information on TIP.]

Service Coordination and Intensive Case Management

After leaving the Buckeye Ranch, Yati lived in a group home until age 17, when she moved to a supervised apartment. Although still under the auspices of children's mental health services, she also began to receive assistance from the North Central Transitional Team. Three female "wrap-around" staff members helped her learn a range of skills from cooking and grocery shopping to balancing a checkbook and adhering to a budget.

Yati developed an especially close relationship with her case manager, Kim Terhlen. When Ms. Terhlen discovered that Yati was anxious about riding buses, she got on the bus with her and helped her learn the ropes. Sometimes the two went clothes shopping together. "Kim was awesome," Yati recalls. "In the beginning we bumped heads because we were a perfect match. She worked with you according to your personality. I was cocky and headstrong, and she gave it right back. She knew what kind of person I was. I grew to respect her so much."

A key strategy for effective transition services is development of a flexible and collaborative approach among different provider agencies, tailoring services to the needs of the individual. "If it is not collaborative, one agency will bring its own orientation and service array but may be too restrictive in terms of other needed services and supports," Dr. Clark notes. "If the emphasis is on mental health, for example, the focus may be on behavioral and emotional issues and on social skills development but not on the critical need for housing or links to a job that fits the individual's real interests. If the emphasis is on education, there may be a school-to-work' focus, neglecting other critical issues such as relationship with parents or substance abuse treatment. We must attend to the transition needs that exist across the domains of employment, educational opportunities, living situation and community life adjustment."

Dr. Davis points out that intensive case management, in which a case manager develops a close and trusting relationship with no more than 12 young people and their families, is critical for effective service coordination during the transition period. She says that case managers must possess both a keen understanding of the youth with whom they work and a thorough grasp of the "universe of services" available in the community. This level of case management is much more intense and focused than standard case management, she notes, but it is necessary to enable young people and their families to participate fully in the services and support planning process.

Effective case managers must have a range of skills that includes an understanding of: (1) the developmental stage of youth in the transition period, including a distrust of authority, experimentation with "alternate" lifestyles and the need to fit in with peers; (2) the strengths and needs of the young people being served; (3) the complex relationship that youth at this age have with their families; (4) the ins and outs of child and adult systems; and (5) the community resources that can be drawn upon to help young people.

"You have to know all the resources, formal and informal. You pick everybody's brains and help everybody think about what needs to be done," Dr. Davis says. She emphasizes the importance of tapping into the "team knowledge" of the entire transition staff as well as each youth's formal and natural support systems including families and friends. "Once you begin talking about what the young person wants and needs, everyone starts seeing what they have to offer in a new light," she notes.

Gaps in Mental Health Services

Gaps between the children's and adult mental health systems are one of the primary barriers to providing effective transition services. "The two systems are not designed to interact with each other. They are like trains on separate tracks," according to Maria Bruculleri, Ph.D., Clinical Director of Project Nexus. In fact only one- third to one-half of all young people who receive public mental health services as children go on to receive services from the adult system. According to Dr. Davis, there are several reasons for these gaps. First, the two systems serve substantially different populations in terms of type of mental illness. The children's system, Dr. Davis explains, serves a large number of youth with disruptive behavior, affective and anxiety disorders, while the adult system focuses primarily on individuals with schizophrenia, psychoses and other serious mental illnesses that usually do not appear until late adolescence or early adulthood. A high proportion of young people who "age out" of the children's mental health system do not meet the criteria required to receive services from the adult system, although they do need continued services and supports.

The two systems also operate differently. In children's mental health services, for example, case managers place a high priority on interagency coordination to ensure that young people receive needed services regardless of which agency provides them. The adult system differs in that consumers themselves have much greater responsibility for service coordination. "The adult system may assume a level of maturity and skills not yet developed by young people in terms of identifying and coordinating their own services," notes Dr. Davis. "A young person who may never have made a doctor's appointment might be unrealistically expected to coordinate with several different agencies."

In addition, young people in their late teens and early 20's have a difficult time fitting into programs designed primarily for adults in the 30-to-60 age bracket. What is needed, according to Dr. Davis and other experts are services designed specifically for young people at the threshold of adulthood. Issues to be addressed include balancing independence with the need for family support, developing basic life skills, obtaining housing and employment, participating in age-appropriate mental health services including those for co-occurring mental illness and substance use disorders, education and career planning and pursuing social and recreational interests. Some young people may also need child care, and those involved in the juvenile or criminal justice systems require a range of supports to resolve their legal problems.

For many young people, a college or university campus or the military provides the mexture of independence and structure they need to negotiate the journey from adolescence to adulthood. Young people with emotional and behavioral difficulties do not always have access to such traditional transitional experiences, and even those who do may still need additional services and supports to help them succeed.

A key goal of transition is to provide a set of opportunities for youth with emotional and behavioral difficulties that are comparable to the college experience. Some transition programs such as one in California's San Mateo County collaborate with a local college or university to enable participants to take courses on campus.

"These young people are just starting out in life. They want to articulate themselves, develop self-esteem, intereact in productive ways with the world. It is important to highlight their strengths," Dr. Bruculleri says. "People can have very serious conditions and circumstances and still do something wonderful with their lives."

Education and Employment

Through the North Central Transitional Team Yati obtained her GED and entered a job training and placement program where she earned a nurse's aide certificate and found a job as a private duty nurse. Now she is enrolled full-time in the community college lab technician program while working part-time for a temp agency.

"I never knew at 16 or 17 that I had it in me to go to college," Yati recalls. "College isn't for everyone, but you never know until you try!'"

More than half of all youth with emotional and behavioral difficulties never complete high school. Some drop out; others are expelled. Few schools have developed strategies for helping these young people succeed in educational settings.

In an effort to address this problem, the U.S. Department of Education recently funded 10 pilot projects designed to ensure that young people with emotional and behavioral difficulties remain in school or complete their schooling through an alternative education program while also participating in a range of transition services.

Project RENEW (Rehabilitation, Empowerment, Natural Supports, Education and Work) based in Manchester, New Hampshire—one of the 10 pilot projects serves youth with emotional disturbances and young adults with mental illness from ages 16 through 22. The project is a collaboration among the New Hampshire Community and Technical College, the Manchester School District, the local office of the Division of Vocational Rehabilitation and the Manchester Mental Health Clinic.

Key program components include personal futures planning, a flexible high school curriculum, interagency collaboration and coordination, social skill building, mentoring, and individualized and flexible resources. Under the flexible curriculum, students can earn credit both for classroom studies and for a variety of work experiences.

This project is designed to ensure that participants have an opportunity to consider different career alternatives and to gain education, training and experience in areas that match their interests and strengths.

Co-Occurring Disorders

When Yati was 16, she tried to enroll in several substance abuse treatment programs for youth. She was turned down each time because of her co-occurring mental illness. Once she entered the North Central transition program, however, she began participating in services at Riverside Hospital in Columbus. "We talked about all the issues—where drugs and alcohol are separate from mental illness and how they coincide," she notes. "It was the most refreshing time of my life, and I've been clean ever since." She says program participants were "young, old, black, white, rich, poor. None of that mattered. We were still friends."

As Yati unfortunately discovered, it can be difficult to obtain services for co-occurring mental illness and substance use disorders. In some cases, substance abuse treatment programs are reluctant to provide services to young people with mental illness. In others, mental health programs decline services to those with substance abuse problems.

"Substance abuse is one of the few behaviors that once identified can be grounds for excluding someone from services," notes David Stewart, Ph.D., a clinical psychologist with the Odessa Brown Children's Clinic at the University of Washington in Seattle. "It's one of the frustrations young people face—you can get kicked out of treatment if you have a substance abuse problem."

Yet Dr. Stewart argues that such exclusionary policies fly in the face of current understanding about links between substance abuse and mental illness. "We have consistently found that substance abuse is a marker for ongoing psychopathology in kids," Dr. Stewart points out.

At the Prime Time Project, which operates under a grant from King County to the University of Washington, Dr. Stewart and other staff members work intensively with young people who have co-occurring mental illness and substance use problems as part of a campaign to reduce the number of incarcerated juveniles in the county. Many of those who receive services are youth moving from adolescence to adulthood. Dr. Stewart notes: "We intervene in whatever system is necessary–schools, probation, families, social services, juvenile justice, housing, employers–often serving as a system navigator' to develop a consistent plan."

A Place of One's Own

One of Yati's most significant steps forward was moving into an apartment of her own. Having an apartment was a sign of her growing maturity and stability. It was also a challenge, which served as a staging ground for learning a range of life skills and entering the world of adulthood and work.

Moving into one's own apartment can be both an exhilarating and sobering experience for any young person, including those with emotional and behavioral difficulties. "Young people are typically naive about what living on their own entails," explains Melissa Platte, Associate Director of the San Mateo County, California, Mental Health Association (MHA), which operates an extensive housing program for youth and adults with mental illness.

"Young adults, especially those who have been in foster care or institutional settings, often believe that when they turn 18 they will get an apartment, a job, a car, a girlfriend or a boyfriend and that all their problems will be resolved," Ms. Platte points out. "Then they move into an apartment and find that things aren't so easy. You can't always play music loud, you have to put yourself on a tight budget and you have roommate problems."

Nonetheless, Ms. Platte believes that having a place of their own is an important step for young people on the road to independence. For many, who have no other place to go, it is also a necessity. When the San Mateo MHA opened an emergency shelter in 1976, Ms. Platte says, officials found that many of those who came to the shelter were "young adults with no resources" including several who had "aged out" of foster care.

"We were trying to determine how to serve youth and young adults as a separate group," she recalls. "Housing young adults in facilities with older adults helped us to recognize the very real differences between the two groups with respect to experience, hopes and aspirations, as well as to identify their unique needs. As a result our agency collaborated with another nonprofit agency to develop a transitional housing program specifically for young adults. The program is housed in a four-plex' in a residential neighborhood near transportation, schools and shopping. Young people move from this program to their own or shared apartments." As a follow-up service, especially for individuals who are moving to their own apartments, the MHA instituted the Community Housing and Rehabilitation Independent Skills (CHRIS) program, through which occupational therapists work with young adults in their homes to assess their interests and skills and to develop training programs or to help them make community connections to achieve specific educational or vocational goals.

San Mateo County provides the majority of funds for both the housing and CHRIS programs, with additional financial support coming from private foundations.

According to Ms. Platte, there are more opportunities for organizations such as the San Mateo MHA to obtain housing financing now than there were a decade ago. She says that the MHA has developed a track record and contacts throughout the local and national housing communities that enhances its ability to access housing funds. The association has carried out several small projects through the U.S. Department of Housing and Urban Development's (HUD) Community Development Block Grant and HOME programs.

The association also provides housing through HUD's Shelter-Plus-Care program, in which the federal government provides Section 8 housing vouchers and local governments make matching contributions of services and supports and funding. In addition, the MHA has obtained community development funding from local banks at interest rates that are lower than conventional mortgage rates.

"Housing provides the stability that makes it possible for individuals to live, learn and work productively in the community," Ms. Platte asserts. "Only after an individual is safely housed, can other critical issues including education, vocational goals, mental health or physical problems be addressed. Providing suitable, affordable, desirable housing can provide the motivation for youth and young adults to connect with programs which provide skill building and training necessary to successfully make the transition from adolescence to adulthood."

Conclusion

"The state says you are an adult at 18, but that is not true all the time," Yati asserts. "You need to have an in-between' system to help young people figure out how to become adults. Interacting with others, you find yourself asking, What can I do?,' What are the possibilities?' instead of just settling for I'm mentally ill, and I'll get SSI for the rest of my life.'" In addition to her studies, Yati is collaborating with Dan Bridgeo, Ph.D., of the North Central Transitional Community Treatment Team on a chapter for an upcoming book on transition services.

Advocates say that providing services for young people making the transition from adolescence to adulthood needs to be a national priority, with commitment and funding coming from all levels of government. Dr. Clark notes that successful transition programs often result from grass-roots support and advocacy by consumers and family members as well local agencies that serve youth and young adults.

Dr. Davis calls for a national commitment to transition services that parallels the commitment made to children's mental health programs during the past decade. "Why not have grants to support transition services and research just as there were planning grants for the Child and Adolescent Service Support Program (CASSP)," she says.

Editor's note: Special thanks go to Maryann Davis, Ph.D., and Hewitt B. "Rusty" Clark, Ph.D., for providing expert guidance on transition services throughout the development of this article. Dr. Davis and Dr. Clark are coauthors of a book-in-progress on transition services.



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Focus on the States

Ohio Transitional Team Aids Young People on Path to Adulthood

Since 1990 the North Central Mental Health Services Transitional Team of Franklin County, Ohio, has been a pioneer in providing services to young people with emotional and behavioral difficulties as they move from adolescence to adulthood.

The Transitional Team is one of 28 teams initiated during the 1980's and early 1990's by the Franklin County Alcohol, Drug Addiction and Mental Health (ADAMH) Services Board to provide intensive, individualized case management services for individuals with mental illness. The Robert Wood Johnson Foundation provided initial funding to begin the project in 1986.

The team's annual budget of about $875,000 comes from a variety of sources, including a county mental health tax levy and Medicaid. Both the children's and adult mental health systems provide pools of flexible funds, which the team can use to provide whatever services are needed.

Since its inception, the Transitional Team—located near Ohio State University in Columbus—has worked with more than 250 youth and young adults between the ages of 16 and 22, providing direct services and brokering services from other community agencies including the children's and adult mental health systems.

"We work fluidly with the youth and adult systems in a way that few other programs have done, and we sustain this by being active participants in both systems," notes Dan Bridgeo, Ph.D., Transitional Team Leader. The team maintains close ties with a variety of local agencies and organizations including hospitals, schools, the child welfare agency, vocational rehabilitation and job training agencies, housing agencies and the juvenile and criminal justice systems.

Dr. Bridgeo says that children's and adult mental health officials welcomed the Transitional Team from the beginning and participated fully in efforts to establish effective transition services. "We looked at how young people were doing, what was working, what was not," Dr. Bridgeo recalls. "We tried to identify system gaps and set about trying to address them, beginning with the most important ones."

The county mental health department's central intake and assessment office refers young people with the most serious emotional and behavioral difficulties and the greatest need for services to the Transitional Team. Team members work with each youth to develop a "comprehensive life domain assessment" that addresses his or her functioning in the key areas of family relationships, housing, education, employment and career goals, need for mental health services and supports and other primary medical needs. The team then collaborates with the young person and, whenever possible, his or her family and other members of the individual's formal and natural support network to develop a plan for services and supports. The team works with up to 100 youth at any given time.

Young people remain in the transition program for an average of four years, which makes it possible for team members, participants and their families to develop a close and trusting relationship. The emphasis on intensive case management based on the assertive community treatment (ACT) model coupled with a clear focus on each youth's strengths, interests and goals enables participants to address their emotional and behavioral difficulties while formulating long-term goals and taking concrete steps to achieve them.

The Transitional Team is composed of the team leader, seven case managers, a psychiatrist, a vocational specialist, a therapist, a registered nurse liaison and two staff members who work at apartment complexes owned and operated by the team. Wraparound staff, case aides and paraprofessionals are brought in as needed. Team members meet daily to discuss participants' progress, review program activities and plan future activities.

"Everywhere I go people tell me they struggle with this population," notes Dr. Bridgeo, who has consulted on youth to adult transitional services with mental health agencies in Ohio and elsewhere. "I tell them they don't necessarily have to start a whole new transition network, but they need to earmark some funds and human resources for this purpose. Transition services deserve to be a top priority. Providing intensive services and supports to young people during this stage in their development pays off for a lifetime."

For additional information, contact Dan Bridgeo, Ph.D.,Team Leader, North Central Transitional Community Treatment Team and Family Focus, Franklin County, Ohio, at 614-299-6600 or e-mail danbridgeo@aol.com



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TIP Program Principles

The Transition to Independence Process (TIP) developed by Hewitt B. "Rusty" Clark, Ph.D., of the Florida Mental Health Institute at the University of South Florida has served as a model for many transition services around the country. Here is an overview of key TIP principles:2