When Kristin Huff first started having problems with her schoolwork at the age of 6, teachers at her Wichita, Kan., elementary school labeled her “learning disabled” and placed her in a special-education program.
At age 12, when the emotionally troubled youngster repeatedly tried to kill herself, the school’s response was no different. Kristin continued to receive special-education services for her learning disability and little else.
When, at 16, a struggle with anorexia nervosa caused Kristin’s weight to drop to 76 pounds, her educational status again remained unchanged.
“She was never identified as behavior-disordered,” recalled her mother, Barbara Huff. “She was never offered psychological services, and, as parents, we didn’t know where to turn. It was just a nightmare.”
The Huffs’ nightmare is one shared by many parents of seriously emotionally disturbed children, experts in special education and the mental-health fields maintain.
Called by some the “most neglected” of all special-education populations, these children, like Kristin, have long been either undiagnosed, shunted off to residential hospitals far from their homes, expelled from school, or simply lost in the juvenile-justice system.
Now, however, a coalition of parents, educators, and mental-health professionals is working to end such nightmares. And, when federal lawmakers sit down this month to begin the process of reauthorizing the landmark special-education law that many believe mandates services for such children, the seriously emotionally disturbed will, for the first time, be on center stage.
“I’ve been in Washington, D.C., since 1967,” said Frederick J. Weintraub, a lobbyist for the Council for Exceptional Children, “and this is the first time that I’ve ever seen that Congress intends to give attention to this issue.”
Nearly 380,000 children in schools across the country--nearly 1 percent of the total school population--have been identified as seriously emotionally disturbed. But experts say their numbers are actually much greater--closer to 3 percent of the school-age population by one conservative estimate.
These are children who suffer from behavior disorders, depression, schizophrenia, anxiety disorders, and a variety of other mental and emotional disturbances.
Under the Education for All Handicapped Children Act--the federal special-education law that is up for reauthorization--children diagnosed as emotionally disturbed may be entitled to psychological counseling as a “related service"--but only if they need the counseling in order to benefit from special education.
In practice, experts say, few such students ever receive the help they need. A 1982 study by the Children’s Defense Fund estimated that two-thirds of seriously disturbed children were not getting that help anywhere--neither through schools, from mental-health agencies, nor in private therapy.
“The neglect of this population is beyond belief,” said Margaret Samels, a Montgomery County, Md., parent of a child with emotional and behavioral disturbances. “You hear about this facility and that law and this treatment technique and that journal, and you assume that it’s all there, but it’s not.”
A growing realization that this population was somehow “falling through the cracks” led in 1986 to the formation of the National Mental Health and Special Education Coalition--an umbrella group of 21 national and local organizations in both the education and mental-health fields.
While national groups have long served as advocates for other groups of handicapped children, experts say the coalition’s formation marked the first time anyone had ever spoken up for the emotionally disturbed child on a national level.
“I don’t understand why this hasn’t been done before,” said Chris Koyanagi, a lobbyist for the National Mental Health Association and co-chairman of the coalition. “From the beginning, there was just sort of a drumbeat of consensus as to what the problems were.”
After debating for two years and pushing for changes in the federal Medicaid system that would allow schools to be reimbursed for some psychological services, the coalition this year has seized on the reauthorization of the landmark federal special-education law as a vehicle for change.
During hearings before a House panel on March 14, the group plans to press for greater incentives for training personnel to serve this pop4ulation, redirection of federal research dollars for the development of model programs, and clearer federal guidelines on when and how schools should serve such children.
Part of the problem facing these children in school, coalition members and other experts say, is that the federal regulatory language defining the population is vague and impractical. It requires, for example, that the students’ condition be evident over a long period of time and that it be shown to have a detrimental effect on schoolwork.
“If a child is suicidal but didn’t have a problem until two weeks before, do we consider that a long period of time?” asked Kevin Dwyer, a Maryland school psychologist who works with the coalition on behalf the National Association of School Psychologists.
The law also prohibits schools from serving children who are simply ''socially maladjusted"--a term psychologists say is hard to define.
“I’m a clinical psychologist,” said Albert Duchnowski of the University of South Florida’s Research and Training Center for Children’s Mental Health, “and I have a hard time diagnosing ‘socially maladjusted’ kids.”
Once identified, the seriously emotionally disturbed student still may not get all the services needed because schools cannot provide them. A recent federally funded study of 60 school districts throughout the country found that only a third of the districts offered any psychological counseling at all.
Moreover, the school psychologists’ group estimates, there were nearly 500 unfilled psychologist slots in large urban districts and financially strapped rural school systems last year.
The Huffs’ experiences bear out such statistics.
“I’ve had special-education directors flat out admit to me, ‘Barb, I can’t put that on an i.e.p. [individualized education plan], because we can’t provide it,”’ Ms. Huff recalled.
And, more than for any other handicap, incidences of “teacher burnout” are greatest among teachers of disturbed youngsters, experts say.
“I don’t quite know how to say it,” offered Mr. Weintraub, who is co-chairman of the coalition, “but this ain’t the nicest bunch of kids.”
“Everybody likes to teach the preschoolers and it’s ‘Boy, aren’t they cute.’ But when they get older, they aren’t so cute,” he said.
Even with adequate staffing, problems still arise over how much service schools should provide for these children. It is not clear, special educators and mental-health experts agree, where the schools’ responsibility ends and mental-health agencies take over.
“A lot of times,” said Ms. Huff, who now operates a federally funded parent network in Kansas, “the mental-health department says it doesn’t want to pay for treatment, and schools definitely can’t pay for it, and you end up in this kind of major stand-off.”
In their own case, the Huffs spent $2,000 a month for individual and family counseling sessions.
To Ms. Huff, the expense was preferable to having her daughter placed in a state-operated residential hospital, where the state mental-health department would pick up the tab for her treatment.
“You’d have to go to court and say, ‘I’m just not a good enough parent to deal with this,’ and I can’t do it,” she said.
But many other parents have no choice--either because they cannot afford other treatment or because the kinds of services their children need simply are not available in the community.
“If all you need is an hour of psychotherapy with a therapist, you can find that,” said Ms. Koyanagi. “And, if you’re real sick, you can find hospital care. But you can’t find anything in the middle.”
In addition, said Mr. Duchnowski of the University of South Florida, most public and private insurance plans cover only the costs of residential care. Less intensive services, like outpatient treatment or crisis-intervention counseling, are often not reimbursable.
As a result, he said, many disturbed children end up in institutions, when, with the proper community services, they might have been able to stay at home.
These were the kinds of choices facing Naomi Karp two years ago when her son developed a panic disorder in his first year of high school. Like the Huffs, she went into debt for a private treatment program that would allow her son to stay at home.
Ms. Karp also found, when she looked around for support from other parents, that no organized parent group was there to help her. She said parents, often stigmatized by their children’s conditions, have long been reluctant to come forward and express their dilemma.
“For many years, mental-health practitioners were too quick to say, ‘It’s the parents’ fault that the kids are like this,”’ she said. “That’s not true.”
Ms. Karp eventually found parents around the country, like Ms. Huff and Ms. Samels, who were just as “fed up” with their limited options as she was. Their meeting late last year led to a new first--the formation of a national parent-advocacy group for emotionally disturbed children. Tentatively named the Federation of Families for Children’s Mental Health, the group will hold its third meeting this month.
“My belief is that, when parent-advocacy groups become operational, services will increase,” said Mr. Dwyer of the school psychologists’ association. “All the research in the world is not as good as a parent-advocacy group.”
