or
the parents of some severely mentally ill children, it can come to this:
pleading with emergency-room psychiatrists who have no good answers.
Listening grimly as caseworkers explain their lack of options. Appearing
tearfully before family court judges as they take what they regard as a last
desperate step in pursuit of medical care.
What these mothers and fathers are being urged to do is agonizing: give up
custody of their children and turn them over to New York State's child
welfare agencies so that they can get the mental health care that they
otherwise cannot afford or gain access to.
Repeatedly, these parents say, they are told that giving up their
children is the only way to help them. Private insurance does not pay for
children who may need a year or more of intense treatment, at costs that can
exceed $60,000 a year. For the many who cannot afford that, the number of
state-financed beds for mental health patients is tiny and the wait long.
But a child placed in foster care can be sent to facilities that, while
not designed to deal with mentally ill children, have many more openings and
at least some psychiatric services.
"That was the hardest decision I ever had to make," said Donna O'Clair,
who with her husband, Tom, allowed Schenectady County to take custody of
their suicidal 11-year-old son when he needed more care than their health
insurance would cover.
The state's Office of Children and Family Services, which oversees New
York's child welfare agencies, does not keep a count of how many children
are turned over to it in need of mental health care. And the state says it
discourages the practice by offering alternatives.
But judges, lawyers, social workers and parents from Brooklyn to Buffalo
say it happens regularly.
In New York City, for example, officials at the Administration for
Children's Services say about half their intensive-care beds are filled not
by abused or neglected youngsters, but by those placed there directly by
their parents or through a court program for troubled youths that parents
enter voluntarily.
"There are all sorts of permutations of folks trying to get into the
foster care system because they have not been able to get into the mental
health system," said Raymond Schimmer, the executive director of the Parsons
Child and Family Center in Albany, which runs mental health and foster care
facilities. "In extreme cases, you have parents who claim that they've
abused or neglected their children."
For parents who resort to giving up a child, eight of whom were
interviewed for this article, the experience is fraught with uncertainties.
They have the right to ask for their child back, but must win the approval
of a judge. They receive legal notices warning that after 15 months in
custody, their child could be put up for adoption. They have no control over
where their child is sent or, in some cases, what treatments the child
receives. Some parents have, for periods, lost track of their children
entirely.
"Do you make children with cancer have their parents give up custody so
they get the care they need?" asked Tracy Zeltwanger, a county worker in
Watertown, N.Y., who was prodded to relinquish her 9-year-old son, Corey,
who has early-onset bipolar disorder, doctors say. Ms. Zeltwanger ultimately
refused.
New York parents are not alone. At a time when health care costs are
soaring and the number of children with complicated disorders is increasing,
the quandary of custody versus care is a phenomenon throughout the country.
Thirteen states have passed laws to prohibit the practice of exchanging
custody for care, according to the Bazelon Center for Mental Health Law in
Washington.
Such a law might help in New York if mental health resources were not so
scarce, said James Dillon, a family court judge in Erie County. "But there
are a limited number of beds," he said.
For children who need extensive care, New York offers two basic options.
There is the one that was explicitly intended for such children: the state
mental health system, which has about 540 residential treatment beds.
And there is the one that was not intended for them: the foster care
system, which has about 4,000 beds but limited ability to handle mentally
ill children.
New York has tried to come up with alternatives that would allow more
children to stay at home. The state participates in a Medicaid program that
pays for services like in-home counseling for children who are at risk of
being hospitalized, even if they are not eligible for Medicaid. Still, there
are only 610 spots.
So, for parents who say they have tried everything else, giving up
custody can seem like the only option.
Some parents, despite the pain of separation, are happy with the services
they receive.
Other families confront a host of difficulties. They enter a world
unaccustomed and, some insist, hostile to parents who take an acute
interest in their children's care. But the biggest frustration, parents say,
is that giving up custody does not guarantee that their children are kept
safe or given adequate attention.
The money to provide mental health treatment in foster care is actually
very limited. Often, said Harriet Mauer, the director of social work for
Good Shepherd Services, a foster care provider in New York City, foster care
facilities must turn to the same overburdened community mental health
clinics that parents do. Often, a determining factor in treatment is simply
the availability of an open bed.
"They push the parents to give up the kids, and I don't understand why,
when they don't have the care that they need," said Kathryn Strodel, a
lawyer at Legal Services of Central New York, in Syracuse, who has
represented parents who have relinquished custody.
A Child With Autism
Daniel is a 16-year-old, 200-pound autistic boy with an emotional disorder.
He sometimes pretends that he is the Incredible Hulk and tries to rip off
his clothes in public. There are dents in the walls of his mother's Bronx
apartment from his punches. More than once a week, his mother said, she
needed to call the police for help. "This is a child," she would say when
she thought they were handling him roughly.
Daniel would be taken to the hospital, calmed, and discharged.
Agencies that deal with autism said they could not help for a variety of
reasons. The mother's sister grew afraid to baby-sit.
The mother, who insisted that the family's name not be used for fear of
retaliation against Daniel, said "I've used sick days, vacation days,
personal days and leave without pay to do what I've done with this kid."
At the hospital, she said, she had been regularly told by doctors and
social workers that the only way to get help would be to leave her son
there, so that she would be reported for abandoning him and the state would
take custody.
State officials say that the average wait for a mental health placement
in one of their specialized facilities is about two and a half months, but
caseworkers and families report waits of up to 18 months. Because of the
wait, some foster care providers say, many children who qualify for mental
health services are never even referred to the state mental health agency
but are simply diverted into foster care.
After one particularly violent outburst by Daniel, his mother, afraid for
herself and her teenage daughter, left him at the hospital and called the
child-abuse hot line to report what she had done. At a meeting with a social
worker, she said, she agreed to sign over custody when a place was found for
Daniel.
It was not an easy moment.
"Parents are dealing not just with the child who has mental illness, but
the siblings and how they are reacting to it, and with how exhausted they
are," said Karen Hebrock, who runs admissions for the Rochester-based
Hillside Family of Agencies. "It is very intimidating for families. It is a
scary kind of thing."
But this mother did it. "I didn't want Daniel to hurt someone or be
hurt," she said.
It was not clear, however, that the foster care group home where Daniel
wound up five months later was prepared to handle him. On a visit in
November, his mother discovered that four days earlier, without her
knowledge, Daniel had been taken to the hospital with a head wound so deep
that it required staples instead of stitches.
A spokeswoman for the city's Administration for Children's Services said
that she could not discuss specific cases, but that parents were notified of
injuries.
But when Daniel's mother demanded to know what had happened, she said,
the center director "told me that he doesn't have to tell me nothing that
happens to my son."
Daniel has since been moved to another group home.
Violent Threats
Mental illness is often cyclical. It rages and subsides, which can make it
difficult for families to get help exactly when and for how long it is
needed.
More than once, Timothy O'Clair threatened his mother and brother with a
knife. He had to be physically carried to school in Rotterdam, N.Y. One
night, he threw rags into the family's furnace.
Twice, he landed in a psychiatric hospital. Both times, it was about a
week until the insurance company decided to "bounce him," in the words of
his father, Tom.
It was not too long before Timothy's behavior became overwhelming for the
O'Clairs. He tried to choke himself at school, his grip so tight that the
hall monitor could not pry his fingers loose. The O'Clairs Mr. O'Clair is
a mechanic; his wife, Donna, is a nurse's aide knew that their son needed
more than a week in a hospital.
The Schenectady County Department of Social Services offered foster care.
Mr. O'Clair said: "I am not a mom, so I don't know what emotions Donna had
to fight with to go along with this. I just know it was real hard to go
along with."
After a brief stay at a standard foster home, Timothy was sent to a
residential treatment center run by the Northeast Parent and Child Society
in Schenectady. Mrs. O'Clair watched tensely from the sidelines, taking her
son to his doctor's appointments and going to see for herself that he was
all right after he briefly ran away.
Yet the O'Clairs actually saw a marked improvement, and they felt the
county was interested in their son's well being. After seven months, Timothy
was allowed to come home. He had therapy and his medication was monitored.
But things began to fall apart again. Six weeks after his release, Mrs.
O'Clair found her son hanging in his closet, a suicide at 12.
Mr. O'Clair laid some blame at the feet of an insurance system that does
not provide as much coverage for mental health as for physical health. "We
would have liked to have gotten him to a doctor more often, instead of when
the insurance allowed it," he said. "I feel like if we hadn't been so
restricted on the access to the care, maybe he would still be here."
A Need for Attention
Sometimes the foster care system absorbs mentally ill children even when
their parents do not voluntarily give up custody.
For the Kendalls, the trouble with their daughter, Jamie, started roughly
at age 12. She told outlandish lies, once producing a photo of a baby cousin
as proof that she had a son. She disappeared for days at a time.
The diagnosis was histrionic personality disorder, an illness
characterized by a pathological need for attention.
But the remedy proposed was a court program intended to deter budding
juvenile delinquents. At the school's urging, Jamie's mother, Elaine
Kendall, a Cheektowaga, N.Y., postal worker, filed a court petition stating
that Jamie was a "person in need of supervision."
Jamie was assigned a probation officer and ordered to get counseling. For
a time, she wore a monitoring bracelet on her ankle. When she misbehaved,
her probation officer threatened her with a foster care placement.
Mrs. Kendall said she did everything she could to avoid having Jamie sent
away. She tried unsuccessfully to get her into a children's psychiatric
hospital or a day treatment program. She scoured the Internet for programs
her insurance might cover.
The Erie County social services department provided a succession of
social workers and crisis counselors, but turnover was so rapid that they
rarely had a chance to see Jamie in a crisis period.
A judge eventually ordered Jamie sent to the Wyndham Lawn Home for
Children, a foster care residential treatment center in Lockport, N.Y. Nine
months later, she came home and promptly ran away again.
"The placement did absolutely nothing," Mrs. Kendall said.
Jamie eventually returned to foster care.
What is striking about cases like Jamie's, said Ruth Foster, the director
of public policy for Families Together, an advocacy group based in Albany,
is that what help she did receive came from the state's social services
office, not its mental health system. It amounts, she said, to nothing
better than a patchwork solution for a demanding problem.
Families Together is pushing legislation that would require insurance
companies to cover mental health at the same rate as physical health, and
other groups would like to see a law forbidding child welfare agencies to
require custody.
State mental health officials, for their part, insist that there is a
wide array of such services available, including in-home counselors.
"There are some states where their approach is to force the parents to
relinquish custody," said Dr. James C. MacIntyre, the clinical director of
the bureau of children and family service at the State Office of Mental
Health. "That is not and never has been New York's approach, and in fact New
York has many other options that are out there."
But Jamie's family was never offered the things that might have kept her
from being sent away twice.
Jamie, 16, is now home. She has joined an all-star cheerleading team and
has just started a new job at a car wash. At school, she has been classified
as emotionally disturbed, so she attends a special class of only six
students. The Kendalls have worked their way to the top of a four-month
waiting list for some mental health services that insurance does not cover.
But Mrs. Kendall did not hear about the special class or the services
from Jamie's school or probation officer. She learned about them from her
brother-in-law, who happens to work for the county. "I said," recalled Mrs.
Kendall, "this is probably what we needed all along."