A CASE FOR INDEPENDENCE

From: Salt Lake Tribune, UT - May 4, 2003

    He suddenly speeds to a bank of windows, his movement marked by a limp that ends with a quick "whump, whump, whump" as his shoe repeatedly slips from his right foot.
    For 50 minutes, the 17-year-old has been pacing between the windows and a counter more than halfway across the room, avoiding interaction with the other boys scattered around a pool table, a television set and a computer.
    Now at the window, John is ecstatic and breaks his usual silence.
    "That's them, them, them," he says in a garbled voice that echoes in the high-ceilinged room.
    It's 6 p.m. and John is staring at a couple emerging from a car he just spotted. It's his ride, his ticket from the Boys Group Home -- a short-term shelter in South Salt Lake for teenagers who are in the custody of the Division of Child and Family Services.
    John has waited 38 long days for this moment. His foster parents are here for him.
    Hundreds of Utah children, many like John with parents in jail for drug abuse, are placed with foster families each year. But John -- not his real name -- is unlike any other youth in state custody.
    John has a hearing impairment.
    John has been diagnosed with a developmental disability.
    John has cerebral palsy.
    John has severe depression.
    And these impairments are just the challenges that John's caseworkers know about on this late summer day.
    Within weeks, they will learn John has uncontrollable rage.
    Within months, they will help him cope with heartbreaking grief.
    By spring, when it is long clear foster care is an unworkable option for John, they will take the extraordinary step of budgeting more than $110,000 to move the teen into his own, one-bedroom apartment.
   
    Hard options: By late April, his caseworkers, who have become like a second family, will start preparing to turn over his care to another state agency, which raises questions about potential cuts to his services.
    In the past, state officials have sent youths like John with a combination of impairments to out-of-state institutions for treatment.
    That is never an option for John. With his case, state officials say they have a chance to do things better, to strengthen a policy designed to serve youths with multiple disabilities within the state.
    Most importantly, they want to keep John attached to a supportive deaf and church community that will be vital in helping him grow up.
    This will not be an easy path. But John's caseworkers are motivated to help a teen who can only be described as a survivor -- someone who remarkably has stayed out of legal trouble and away from the drugs that have destroyed his family.
   
    The beginning: When John arrives in state custody, he remembers little about his mother, including her name.
    Only miles away at the Utah State Prison, Pamela Fisher says she never forgot her son, and regrets that she allowed drugs to destroy their life together.
   Fisher says she was 17, already mother to a 2-year-old daughter and using cocaine daily, when she realized she was three months pregnant with John. She went clean but with his birth, she quickly went back to drugs.
    "He grew up in a drug life," Fisher says, in an interview at the prison in Draper, where she is serving a 5-year sentence on drug charges and is due to be paroled in July. "We [Fisher and John's dad] were both using. We were both dealing."
    Fisher recalls the many health problems her son faced from the start.
    "I remember when he had his first stroke. I remember when he got his first hearing aids."
    The stroke, its cause unknown, came when John was 9 months old, Fisher says. It might have caused John's cerebral palsy, a motor nerve disorder most visible in his limp.
    Fisher recalls faithfully taking John to physical therapy. She also recalls how those trips were such a chore because she would have to stop using.
    Finally, she remembers saying goodbye to John, then 5, and his sister. It was sometime before June 21, 1990, the day she went to prison on drug charges for the first time.
    John's dad, who Fisher describes as a career drug dealer, took their two children to Florida.
    Since then, Fisher has been paroled six times and had two more children, who are being cared for by her mother.
    No one really knows what happened to John in the 11 years he lived in Florida. Did he go to school? Did he receive speech or physical therapy? Did he live mainly with his dad or with his grandfather, whose full name John has forgotten?
    One thing is known: John shares a close relationship with his father, even a special slang sign language.
    "I love my dad and I really miss him," John signs through an interpreter in August, as his father sits in the Salt Lake Metro Jail awaiting trial.
    John, back in Utah with his father since 2000, has been in state protective custody since July with his father's arrest on federal drug trafficking charges.
    Unlike most kids in DCFS custody, John has not been abused. There simply is no one to take care of him. His parents, sister, even his father's girlfriend are all incarcerated on drug-related charges.
    So, John -- months shy of 18 -- is living at the Boy's Group Home, which struggles at first to deal with his deafness. There are only about 40 Utah children out of about 2,000 in protective custody who have hearing impairments and most have not passed through the group home.
    "The system doesn't know what to do with a deaf kid," says John's therapist, Lynette Johnson, one of the state's three licensed therapists who knows American Sign Language.
    John waits at least 15 days with little communication with staff members or the other teens at the group home. He can hear only a little, such as heavy rain hitting the roof or loud noises. Other than laughing, he rarely utters a sound, even after the state supplies him with hearing aides.
    Depressed, he heads straight to bed each day after returning from a special education program.
    State-hired interpreters arrive at the end of July and John's life begins to improve -- at least temporarily.
   
    'Always in pain with my family': John's DCFS caseworker, Robin Tracy, plops two boxes of Kleenex on the conference room table, saying they are for runny noses with the cold season in full swing.
    She's lying.
    John sits at the head of the table surrounded by the people who have taken charge of his life: two other state caseworkers, two school teachers, a leader from his church, the director of the group home and his foster father.
    The group is waiting for John's therapist, who is running a few minutes late, before starting his monthly meeting. The main agenda topic on this January afternoon: wrap up plans for John and Tracy to visit Minnesota, where the teen's dad has been transferred.
    When Johnson arrives, Tracy instantly takes the therapist to the hall. A minute later, Tracy asks John to join them. John and his therapist head into Tracy's office, a cheery room with comics on the walls and toys on a bookshelf.
    In this room, on the third floor of a state office building, Johnson tells John his father died three hours earlier of a brain infection associated with AIDS.
    The real reason for the tissues.
    "I have an announcement," John signs to the group in the conference room about 15 minutes later. "My dad died today.
    "I'm always in pain with my family. I want a good family," he adds, glancing around the room.
    John swings his hand down and punches the table. "I'm just really pissed off right now," he says, and then slumps into his chair and buries his face in his arms.
    In that instant, the people sitting around the table become the closest thing John has to a family.
    They tell him it is all right to be angry, to be sad.
    Although heartbroken, John is not completely surprised by his father's death.
    In the weeks leading up to the death, Johnson had shifted therapy sessions from helping John deal with the possibility his father might be imprisoned for as many as 5 years to trying to explain AIDS.
    The disease that kills his father is just one part of John's new life that he rages against.
   
    Rules and rage: Long before his dad dies, the team working with John discovers his tendency to occasional fits of uncontrollable rage.
    The first of these episodes forces John's return to the group home -- less than two weeks after moving in with his sign-language capable foster family.
    It starts when John refuses to try the broccoli on his dinner plate. John's foster parents have some basic rules in the house -- one is that John at least tries everything on his plate. The teen has had such a limited diet; he's never even had a fresh peach.
    John is angry by the end of the meal. His next move hints of violence.
    Here's how his foster parents describe the incident: As his foster mom loaded the dishwasher, John moved behind her and picked up a knife. It happened to be a butter knife, but that made little difference to John's foster father, who stepped between the two before anything happened.
    John, in a move his foster parents believe was an attempt to calm down, stepped outside -- and disappeared.
    About four hours later, John showed up at the Boy's Group Home, a walk of more than five miles.
    "When you boil it all down, I think he didn't want a new set of parents," John's foster mom says. "He didn't want to betray his parents. This is not a time in his life that you get a new family, new rules."
    John offers his interpretation.
    "My foster parents wouldn't listen to me," he says. "I got mad and decided to leave. I still love them. I just don't want to be with them. I have things I need to work on before I can be with them."
    Gone now is the state's original plan of having John live with his foster family for another year and a half until he turns 19, when the Division of Services for People with Disabilities takes over his case.
    Temporarily, John returns to the group home during the week and spends weekends with his foster family. His outbursts continue, including one that prompts a three-day suspension from school after he pushes a teacher.
    The behavior problems only worsen -- as feared -- after his father's death.
    One night, John lands in jail after punching a staff member at the group home and tossing a cup of water at another.
    "He's having a lot of outbursts at the group home," Tracy says. "He's having a lot of problems getting along with people."
    John's depression, diagnosed as severe when he entered the group home, also worsens.
    "Within five minutes, you could get three different moods out of him," Tracy says. "He's almost back to that point [of where he was when he came into state custody]."
    When asked about his dad a couple weeks after the death, John, slouching in a chair, makes a sign for a heart and then quickly pulls his hands apart as if he's ripping a piece of paper.
    "He's heartbroken," his interpreter says after John repeats the motions, vocabulary from the special language he shared with his father.
    To curb John's decline, Johnson increases sessions and his psychiatrist ups the dosage of his anti-depression medication and prescribes a mood-stabilizing drug.
    John's team also creates a plan to have him hospitalized -- not jailed -- when his behavior swings out of control.
    "In the future, he may not have this much support and he'll go to jail," Tracy says.
    Her assessment hangs ominously even as the state launches an ambitious plan it hopes will bring stability and independence to John's life.
   
    Moving day: In the weeks since the broccoli incident, John's team has been searching for a long-term solution to his plight. He can't stay indefinitely at the group home. He has resisted living permanently with his foster parents. Although now 18, he lacks the maturity and skills to live by himself.
    But what about setting up John in his own apartment with around-the-clock care provided by Rise Inc., a private company under contract with the state to provide services to those with disabilities.
    "Every idea we threw out, [John] wouldn't do," recalls Annie Hanks, director of Salt Lake City-based Rise. "This was the last thing I threw out because this is the option with the most work. [John] was adamant, he wanted his own apartment."
    John is beside himself with excitement with the new plan. He helps search for an apartment. Team members file applications for housing subsidies. Rise hires a rotation of live-in help who know sign language.
    Move-in day comes Feb. 26.
    John has spent 177 days at the group home, a record according to Glosper Brown, the program manager of the home. The average stay is 16 days.
    "No more of this place," John signs through an interpreter the day before he moves. "I'm ready to be independent and living on my own."
    His new home is a one-bedroom apartment. The hallway leading to the front door smells of stale cigarettes. The cramped kitchen, bedroom, bathroom and living room are filled with a mix of new and used furniture.
    It doesn't matter that it's small and old; John loves this place.
    "I haven't seen him this glowing in a long time," says Johnson. "He is so happy."
    The euphoria is short-lived.
    In his most severe outburst since coming into state custody six months earlier, John smacks a girl at school.
    The outburst doesn't end there. John punches a fire extinguisher and wrestles a teacher to the ground and puts her in a head lock.
    "There's a lot of anger there," Tracy says. "He grew up with that type of thing."
    John is taken by ambulance to the psychiatric wing of a hospital, where his caseworkers hope he can receive treatment for the next three days. Instead, he is sent home because all the psychiatric beds are filled. That night, he punches the staff member staying with him.
    John faces as many as six assault charges from the school incident alone. He declines to talk with a reporter about the episode, saying "it's personal."
    Even with this most-violent episode yet, no one is calling for a change in plans.
    "We have to make it work," Hanks says. "That's our only option."
    Changes, however, appear inevitable. Within six months, DCFS expects to relinquish custody of John because of his age. John, while not in the legal custody of any state agency, will receive services through the Division of Services for People with Disabilities.
    It remains to be seen how much of John's current services will be maintained by DSPD. Caseworkers from both agencies are collaborating on a transition plan.
    John's depression, which remains deep, may contribute to more change.
    He's having trouble sleeping. He's not participating in school. He rarely goes to a part-time job, which is paid for by school, and when he does he doesn't work.
    "The death of his father is the main thing," Tracy said. "His whole ID was being [his father's] son."
    John's service team members, preparing for the day they will have to step out of his life, also are working hard to strengthen the ties he has recently began making with a church group and the deaf community.
    His mom hopes to become one of those new ties. In recent months, she has been sending him a letter each week, trying to reintroduce herself, hoping her son will permit her to be part of his life.
    John keeps the letters in a coffee table drawer and proudly pulls them out to show visitors, although it takes him some months before he responds.
    Through the turmoil that has been John's life the last eight months -- being removed from his father, the difficulty with his foster family, the death of his father to AIDS, the outbursts and then finally his own apartment -- the teen has maintained one goal, one request to the people now responsible for his life.
    "I want to be independent."
   -----
    The Salt Lake Tribune has withheld the name of "John's" father and foster parents to protect John's privacy as a minor in state protective custody.

© Copyright 2003, The Salt Lake Tribune.