Too Late For Help?; Families Can Unravel, Solitary Struggle Against Illness a Risky One

By Leslie Sowers

Houston Chronicle

PENNYE Odom probably would not have chosen August, with its breath-sucking heat, for a long campout. Hot dogs every night last week was fun. Hot dogs again this week has lost its appeal. And Campsite 68, she's afraid, may not meet the state's requirement of a permanent address when her two children try to go to school next week.

Still, for now, she's grateful for the tent over her head while she takes one step at a time through the latest calamity in life with her 16-year-old son, Justin.

Homeless, jobless and in need of a camp stove, Odom relies on what she has left: a good heart, a sense of humor and a deep well of loyalty to a child who simply has no idea of the precipice to which he has pushed his family.

"He thinks we're on vacation," Odom said. You could read a list of the mental disorders on Justin Odom's chart, treat a few symptoms with medication and still not know how to begin to help. Categorizing his multiple disorders hasn't enabled any child-serving organization in the state - not even all of them combined - to solve the dilemma of living with Justin.

Children like Justin, at the far end of the spectrum of serious emotional disturbance, tax the ability of any teacher, therapist, psychiatrist or even law-enforcement officer charged with helping them. Agencies, fearing that their treatment needs will deplete scarce resources, put caps on services and don't come even close to a solution.

And the Odoms and hundreds of families like them get worn to the bone as their children go through life increasingly at odds with society around them.

Much of the burden of care falls on the children's families, who suffer loss after loss in this frustrating scenario. Jobs are lost because the school calls so often. Marriages break up when everyone's needs are hostage to the disturbed child. Families become isolated because the community judges both them and their children.

Many families simply give up. No longer able to cope, about 300 families a year abandon custody of their children to the Texas Department of Protective and Regulatory Services, which normally provides residential care for abused and neglected children in the state's custody.

It does not have funds to provide residential care for children with mental health problems.

These desperate families have been pushed to the extreme of abandoning custody of their children because community mental health services are insufficient to meet their needs.

Children with serious emotional disturbance, who often have extreme behavior problems, have been chronically underserved.
In 1982, child advocate Jane Knitzer sparked reform efforts in children's mental-health services with a report showing that only one in three received needed services. Today, despite growth in funding and services for children and adolescents, the state mental-health authority has funding to serve only one in three of the children who most need help. To stretch the dollars among as many as possible, expensive services such as residential care are severely restricted. The Texas Department of Mental Health Mental Retardation has a single residential treatment facility, with a perennial waiting list.

Children who aren't dangerous would be better served in their families and communities anyway, experts agree. But even for them, scarce funding often prevents successful treatment.

In an effort to help children with extensive needs, representatives of 10 child-serving agencies meet at local and state levels to plan their care. Such Community Resource Coordinating Groups can plan services but also lack funds for extensive services. Patti Derr, a regional advocate for the Federation of Families, said the Legislature should fund children's mental-health services so they can be maintained at an intense level long enough to turn chaotic family situations around. Available 90-day programs fall short, she said.

"If we had this (level of funding), practically all these children could be successful in the community," Derr said.

Odom does not want residential care but a home where she, Justin and her 13-year-old daughter, Dazzia, can remain a family. Her odds look abysmal. She's a single mother who couldn't put her office and computer skills to work after her divorce last year because no one would watch Justin after school. They were evicted in June because Justin bothered nearby residents. She lost their trailer home, damaging her credit.

After some turbulent years, Justin is doing well in special education at school. A developmental delay makes it hard for him to express his emotional needs. Like a 3-year-old, he wants to wander and make friends. When he's not at school, Odom must supervise him constantly. When he's frustrated or confronted, he threatens to hit her, and he's done so twice, she said. His behavior can frighten or annoy people who don't know him, she said.

Most children with serious behavior disorders start with incompletely understood brain and temperament differences that make it tough for them to pay attention to any drummer, much less march. They are difficult to help, but if they don't find help, they only get worse.

Early intervention for children with serious emotional disturbance works best. Experts believe many of these children begin with a single problem: attention deficit hyperactivity disorder.

Often, medication and additional educational support are enough. But in some children with ADHD, negative experiences at home or at school lead to a loss of trust in authority. They become increasingly oppositional. By adolescence, they may be forced to the outside by peers and perhaps become delinquent. They also typically acquire more diagnoses: oppositional defiant disorder, conduct disorder, antisocial personality. Often depression and anxiety are added to the mix.

This downward progression is well-documented, and parents watch it happening.

"It's so scary for me, trying to get the help Adam needs," said Rebecca Evans, mother of 10-year-old Adam Troxell.

When he was in first grade, she requested a classroom aide who could help him stay focused, a problem because of ADHD.

Her request was denied. She believes an aide might have prevented his difficulties from escalating. In the past few years, she has seen two new diagnoses - emotionally disturbed and oppositional defiant disorder - but little beyond a segregated classroom to help him cope.

Evans said Adam needs extensive counseling for his anger, frustration and depression. Without it, she fears he might end up in the juvenile-justice system.

Out of the same fear, Kim Nicholson sought help from her local Community Resource Coordinating Group for her son, Blake. "None of the agencies in the CRCG had a solution. They had no funds," Nicholson said. "I literally cried. This child is 12; he can be saved.

He wasn't breaking into houses or into drugs. He was just a kid headed in the wrong direction." Eventually insurance covered residential treatment that Nicholson and Blake's grandmother, Vonda Nicholson, believe is helping with Blake's emotional and behavioral problems.

By the time a family reaches a CRCG, there is often little the group can do to help, said Mary Ann Whitfield, coordinator of the Harris County CRCG.

"These are tough cases that have been through the system," she said. "Many times what brings the referral is the family is desperate for residential care."

This is not generally an option. What the CRCG can offer, she said, is little more than a Band-Aid. There's some money for short-term respite care, a few hours or a weekend in the family's home or in a therapeutic foster home. This can help rejuvenate a family, but it does not address a continuing need, as for after-school care that would allow Odom to work.

To gain the flexibility to meet such needs, some communities are experimenting with pooling monies from several agencies. Instead of contracting for residential care, they provide more intensive community supports for families. The Austin area plans to use $12 million from residential-care budgets for such a pilot.

Though burned-out families sometimes see residential care as a panacea, even those who provide it speak of its limitations. Mitchell Bayes, director of Bayes Achievement Center in Huntsville, believes that centers like his (most of which are privately owned) fill a need but are no substitute for a family.

"The role of residential care should be as limited as possible," he said. Though he said his center provides a consistent structure and intensive counseling for children with severe behavior disorders, he works to prepare them to return to the community and provides them with youth mentors to teach them the social ropes.

In some cases, permanent placement is needed. Jim and Janice Towns worry about who will care for their 17-year-old grandson, Martin, when they no longer can.

Children with behavior disabilities and developmental delays need programs that extend to adulthood, they argue. With some vocational training and behavioral supervision, they believe, Martin could work in the community.

But without these and other programs, guardians are left feeling vulnerable and frightened, in some cases worried that their children are one impulsive act away from the juvenile-justice system - a setting in which emotionally disturbed children are overrepresented.

"If he goes to jail, he's dead," Jim Towns said of Martin. "He's not able to take care of himself. He's just ferocious. He'll anger someone, and they'll kill him."

These families are angry at being left alone to cope with the difficulties of raising their children in a society that doesn't understand their problems and doesn't provide the solutions.

"If somebody doesn't help Adam, what's he going to be like in eight years, when he's 18 and an adult?" Evans asked. "If the school's only solution to a problem child is to file charges on a 10-year-old, they aren't helping."

Evans doesn't expect others to take over her responsibilities for her son, but she knows he needs help to function in school now - and society later.

"Something's wrong, and I think our job is to work together to find a solution," she said.

Rosalynn Carter Fellowship was the impetus for series Our three-part series (concluding today) on the mental health of children and adolescents is the result of a yearlong investigation of the biological aspects of mental illness and how they are incorporated in services at the local, state and national levels. Chronicle reporter Leslie Sowers wrote the series after research she undertook as one of five recipients of a 1997-98 Rosalynn Carter Fellowship for Mental Health Journalism. The fellowship is a project of the Carter Center Mental Health Program, which works to increase understanding of mental illness and to reduce discrimination against those who have it. The fellowship seeks to promote accurate reporting on mental-health issues in print and broadcast media.

Reprinted with permission of the Houston Chronicle, copyright 1998