Sustaining a System of Care

Esther Santos has come a long way. A spring 2008 graduate of Southern High School and a freshman at the University of Guam, she sits on a sofa in a cute halter top, jeans and high heels, her bright smile flashing as she shares that her favorite subject is English and that a teacher told her she is a good writer. It’s a far cry from three years ago, when the fresh-faced 18-year-old was ready to end her life.

“They wouldn’t judge me, they would just help me out.” Esther Santos says the staff at I Famaguon’ta helped her get through high school.It was 2005, her sophomore year. She was at the Inarajan Pool, a popular tourist site at the southern end of the island, wanting to kill herself. The police were there, but it was her wrap coordinator from I Famaguon’ta, Rhoda Gaba, who drove there and convinced her that she wanted to live. "She actually did come down and get me…talked to me, and gave me reasons why I shouldn’t do it.

"At that time, I was just hating on her so much because she stopped me, but now that I look back on it…I kind of owe her my life," reflected Santos, who described her 15th year as unbearable. She was constantly fighting with her mother and stepfather. She had run away countless times and spent nearly six months, including her sixteenth birthday, at Sanctuary. It was at the haven for troubled teens that she was assigned a wrap coordinator from the program I Famaguon’ta, which translates to "our children" in Chamorro. Her initial coordinator was a male, and Santos says she couldn’t really relate to him. She met Gaba at a youth conference and opened up to her about things that were happening in her young life that she still does not want to share publicly. "I felt more comfortable with her," Santos explained.

Santos is one of nearly 500 teens and children that have been referred to I Famaguon’ta and its "system of care" approach to dealing with severe youth and adolescent mental health issues since the program’s inception on Guam in 2002.

One parent, who wished to remain anonymous for her child’s sake, explained that her daughter, now 14, has been in the island’s mental health system since age seven after having experienced a traumatic situation. She said the Department of Mental Heath and Substance Abuse (DMHSA) "did the best they could," but that the biggest challenge was getting her child to participate. "‘I don’t want to be seen with those mental kids’ – that’s her attitude. She thinks she’s fine," the parent explained.

Children's hand imprints adorn a piece of artwork in the hallway of the nearly defunct Children's Unit at the Department of Mental Health and Substance Abuse.
Fighting the stigma of being "mentally ill" is almost as tough for parents and children as dealing with the illness itself, so the fact that I Famaguon’ta is located in the Ada’s Commercial Center in Hagåtña is important to clients and their families. Its colorful waiting room, complete with TV and toys, is a far cry from the sterile, foreboding environment at the DMHSA facility in Tamuning.

"If I Famaguon’ta hadn’t come along when it did, I don’t know where I would’ve gone," said the parent, who says her husband and sister-in-law thought she was wrong to have admitted her child to Mental Health. "You’re dealing with family members as well," she said of the stigma.

“We want to make sure that the system of care concept does not get reversed.” Richard Brown serves as chair of the Guam System of Care Council and as president of G.I.F.T.S. (Guam Identifies Families’ Terrific Strengths).Richard Brown, chair of the Guam System of Care Council and the president of the corresponding parent organization, G.I.F.T.S. (Guam Identifies Families’ Terrific Strengths), says denial is very common among teens with mental health issues. His adopted son was diagnosed with bipolar disorder and attention deficit hyperactivity disorder (ADHD) and didn’t want to take his medication. "To this day there’s some denial," said Brown. When police officers and the Department of Youth Affairs got involved in his son’s case, DYA staff psychologist Dr. Juan Rapadas recognized the problem as severe enough that he brought in I Famaguon’ta and Latte Treatment Center. The privately run Latte is the island’s residential treatment program for adolescents with mental illnesses.

DYA’s mission is to deal with youth offenders. Rapadas and seven staff social workers do their best with over 50 clients in the DYA compound in Mangilao, eight young people at the department’s cottage homes for status offenders (minors identified as beyond control or with truancy issues), and in three village outreach programs. However the agency has also become the front line for minors with mental health issues.

It’s not unusual for the judge to say, ‘Put them in DYA, I know DYA’s gonna take care of them," said Rapadas. "For our community, we don’t have a good in-patient ward for kids."

Dr. Kirk Bellis, who for the last 15 years has been the only child psychiatrist on the island, recalls that when he first arrived on island nearly two decades ago, "either the kid went home or the kid went to DYA.

"That’s why we needed the children’s division (at Mental Health)," said Bellis. He spent four years at the department working with Mariles Benavente, who he says helped to establish the department’s children’s division in early 1990’s. Benavente served as the division administrator until she retired in 1998.

Today, Bellis says the children’s unit has disintegrated in part because it is not a priority. (At the time of this interview, DMHSA officials confirmed that only one child was admitted to the children’s division in-patient unit.) He blames Guam’s political structure, in which a new director is appointed every time there is a change in administration, or even more frequently. "We lost the ability to stay on track because the direction would change every time we got a new director," he said.

That disintegration included a lack of services and support that resulted in children being sent off island for treatment. With no transitional programs for them upon return, the young clients often  ended up in the legal system. Recognizing the need to improve services, Benavente, other providers and families worked together to apply for  the $9.5 million, six-year grant for I Famaguon’ta. Currently a project evaluator for Center for Excellence in Developmental Disabilities, Education, Research, and Service (CEDDERS), Benavente says the children’s mental health inadequacies weren’t unique to Guam. Other communities around the country were operating in the same fashion, with "psychiatrists, psychologists, counselors telling parents what they were doing wrong, labeling kids with their behaviors, and discovering that this approach wasn’t working," she said.

Benavente cites classic examples where families stopped getting services because they didn’t have transportation to an appointment, and were subsequently labeled "resistive." Or where the family was scheduled for a medication appointment but the doctor didn’t show up. She says the system of care focuses attention on consumer needs: "That these are families that have to take off time from work, who have children who have behaviors that are not going to be able to be contained in a room waiting for four hours for a doctor, who are probably suicidal and angry with their parents for bringing them there anyway…so it is really a reform of the way mental health treats families," said Benavente.

“There’s a significant difference in how children are being served under the system of care as opposed to the old way.” Annie Unpingco serves as both the director of I Famaguon’ta and as administrator of the DMHSA Children’s Division.The I Famaguon’ta grant introduced a "system of care" approach that brings together all different agencies involved in the child’s life, including DYA, Mental Health, the child’s school, the court, Sanctuary, and any other agency or entity involved in the child’s treatment.

Famaguon’ta has a staff of 13, including six wrap coordinators and four family partners, that currently juggle 200 active cases. Program director Annie Unpingco, who doubles as the administrator for what is left of the DMHSA Children’s Services division, explains that the wrap coordinator brings all the agencies involved in the child’s treatment to the table "so that the family doesn’t have to run around like chickens with their heads cut off. It’s a very family-friendly system," said Unpingco from her paper-stacked office in Hagåtña.

The family partners are members of the community that support and advocate for the family of the child needing mental health services. "They do a lot of things that are non-traditional," explained Unpingco. She recalled one situation where a child had truancy issues and was kicked off the school bus. The family partner and the wrap coordinator went to the child’s home, pulled the boy out of bed, got him to school, and talked to both the principal and the bus driver to get his bus privileges reinstated.

As to where the parents are in this type of situation, Dr. Rapadas says that is the biggest problem. "You’ve got a lot of parents just not doing their job," he said.

"Many of our parents were not ready to be parents," said Unpingco. "They didn’t know how to set limits, be role models."

I Famaguon’ta’s method of combining traditional mental health services with non-traditional family supports, coupled with attention to non-clinical outcomes such as families feeling that they are not alone in dealing with their children’s mental health problems, tends to cause tension with mental health professionals, according to Benavente and Bonnie Brandt, CEDDERS lead evaluator for the Children’s Mental Health Initiative Evaluation Project.

"It’s not a clinical outcome," said Brandt, noting that some mental health care providers believe their job is to look at only the clinical outcomes. "However the system of care is also interested in other changes such as improved school performance and fewer arrests, the relationship with families and the clinical outcomes.   We should be measuring our success by all of that," said Brandt.

While Dr. Bellis believes I Famaguon’ta has been valuable in helping parents "get through the navigational rough waters of educational problems, court difficulties, the myriad of intake problems that people have going through Mental Health," he says the mental health treatment aspect can be tricky. "A lot of times, personnel at I Famaguon’ta are in over their head in terms of dealing with the issues they have to deal with," Bellis said.

Unpingco notes that although all the wrap counselors have college degrees in social work or related fields, their main work is case management utilizing the wraparound model. "We refer out for counseling needs," she said.

However Rapadas says I Famaguon’ta has made progress in helping to de-stigmatize the treatment of mental illness. "I just had a parent two months ago say, ‘My kid was suicidal, we just sat in the car at Mental Health,’" he recalled. He says the 11-year-old child did not want to get out of the car and go into the Mental Health building. Rapadas says children and parents much prefer the environment at I Famaguon’ta.

“We want to have them to leave here, if possible, with a positive feeling not only about us specifically, but about the whole mental health system.” Dr. Laura Post is the only staff psychiatrist at the Department of Mental Health.Mental Health staff psychiatrist Dr. Laura Post, who treats 95 percent of the clients at I Famaguon’ta, says that initially, the kids will see her white coat "and they think they’re going to get a shot, or parents think they’re going to have the kids locked up, they’re going to be separated from them, all kinds of misconceptions, not only here but probably nationwide."

Despite her white coat, which she wears because of its big pockets and because "it makes me a real doctor," Post says that over time, her young patients see for themselves, "‘I feel better, I’m doing better, I’m getting better.’"

MHSA acting director Dr. Andrea Leitheiser says she wants to keep the program as a separate facility, even though it is part of the department. "For all intent and purposes we do like to keep them out in the community, just like our drug and alcohol PEACE program, however we need to expand the service delivery," said Leitheiser of the I Famaguon’ta program.

Such expansion may be difficult given the department’s depleted staff. Dr. Post is the only staff psychiatrist for the department’s approximately 4,000 active cases, adults and children combined. In addition to Dr. Leitheiser, who is a clinical psychologist, the department has one other psychologist on staff. The web site lists job openings for two more psychiatrists, a clinical psychologist and three social workers, among others.

“What we’re experiencing currently is a lot of support from these agencies, saying it (the system of care) does work...but at the same time, they can’t necessarily allocate parts of their budget (toward it).” Dr. Andrea Leitheiser, clinical psychologist and acting director of the Department of Mental Health and Substance Abuse.Leitheiser’s challenge is that her department is currently overwhelmed with a federal court injunction forcing it to provide specific mental health services to patients, and money is tight. I Famaguon’ta’s grant money runs out next year and the program was supposed to have built up some sustainability in the six-year grant period. Unpingco says she’s been told that the program competes with the permanent injunction for resources.

Brandt noted that the grant was structured to have an ombudsman from each agency to collaborate and share resources. She says each agency was supposed to contribute both financial and resource-wise to the program’s positions for sustainability, but that hasn’t happened.

"So Andrea’s coming into this late and saying I thought you guys were supposed to be at the table, and now we’re (Mental Health) stuck holding the bag, which is a fair perspective," Brandt said. "I think that there’s a lot of support from DYA, I think there’s a lot of support from the court, but there’s not a formal group that’s really trying to come up with a creative way to sustain this," she noted.

DYA Director Chris Duenas would like to see the program become a non-profit organization. "It’s a unique approach to a unique situation," Duenas said. He doesn’t believe the government should grow in these types of service areas.

However Leitheiser doesn’t believe the program would be able to sustain itself as a non-profit entity. "It really needs to be a model of treatment within the department, and so that is what we’re moving towards this year," she said.

Although Leitheiser says 11 classified positions have been created "to actually make some of those (I Famaguon’ta) positions permanent…it was never intended that the Department of Mental Health was going to fund that many." She also noted that the system of care is but one model of treatment. "We’re in support of it, but it doesn’t mean that it’s the only model that is a successful treatment," she said.

Such lukewarm praise for the program may be part of the tension that both officials and parents say has been building "between I Famaguon’ta, "quote unquote ‘non-mental health’ versus the real Mental Health," according to Dr. Rapadas.

Richard Brown points out that mental health professionals seem to bristle at the fact that the program involves parents and other agency professionals in the decision-making process. "This is one of the biggest barriers to instituting system of care, is the very traditional system of turf-guarding, and also the fact that it means you’re going to have to give up some of your authority," explained Brown.

Although the 29th Guam Legislature recently showed its support of the program (spurred on by emotional testimony from parents) by allocating $750,000 to keep it afloat for the next fiscal year, Brown notes that the program itself is not a legal mandate. "What we’re asking for is to legislate it and at the same time, expand the role of I Famaguon’ta," he said.

At a Systems of Care conference held on island in September, guest speaker Dr. Gary Blau, chief of the Child, Adolescent and Family Branch of the national Center for Mental Health Services, noted that Guam is at a critical juncture "as to what will happen next," with I Famaguon’ta. Blau praised the commitment of local professionals and community members for the program, and spoke about different states having legislated the system of care approach. "Changing of the guard always happens," said Blau, but with legislation, "the mandate for systems of care remains."

A July 2008 Evaluation Report of the program funded by the Child Mental Health Initiative Cooperative Agreement states that of the 324 children and youth treated between December 2004 and March 2008 (more received services but were not included due to incomplete data), the number of youth with high total depression scores decreased two years after intake from 30 percent to only 12.5 percent. At intake, 53.8 percent of the clients had been arrested. Two years later, only 20.5 percent of those same clients had been re-arrested. More than half (57.1 percent) of the youths who had school performance problems upon entering I Famaguon’ta showed improvement after two years in the program.

"Sometimes just one person having faith in you can change your life," Unpingco said of the program’s approach.

For Esther Santos, that one person was Rhoda Gaba. Gaba has since transferred to Child Protective Services after earning her degree in social work from the University of Guam, but Santos still speaks of her and the others at I Famaguon’ta with affection. "They’re amazing… they made a big impact on my life, helped me through a lot, especially Rhoda," she said.

While Unpingco points to success stories like Santos’ as proof that the program is working, she and other mental health professionals know there is much more to be done.

"We get a lot of referrals, but I feel we’re scratching the surface as far as meeting the needs of kids who need mental health services."

But without a steady funding source, I Famaguon’ta may not be able to sustain its own survival.