Jun. 10--The
first time doctors suggested that Carol Malka put her
son Robert in a mental hospital, he was 6 and had set
fire to a baby-sitter's house.
"I said, 'No way, he's just a baby,' " she recalled.
The turning point came last fall, when Robert, 14 and
diagnosed with bipolar disorder, held his mother and two
brothers hostage in their car for two hours, breaking
out windows and punching them when they tried to escape.
Malka knew then that he needed intensive treatment.
What she didn't know was that to get it, she would have
to give him up.
Because her private insurer -- like many insurers --
wouldn't pay for long-term hospitalization, the only
option was for the state to fund Robert's treatment
through Medicaid. Which meant Malka had to relinquish
custody to New Jersey's child-welfare system.
"That's a horrible thing," said the 34-year-old
Flemington office manager, who allowed the state to take
custody of her son on Feb. 21. "He didn't ask to have
the problems that he has, and I don't think he should be
ripped out of his family because I can't pay for his
treatment."
Malka's agonizing situation is not that unusual. A
recent report from the U.S. General Accounting Office
found that more than 12,700 parents temporarily severed
ties with their children in exchange for mental-health
care in 2001.
Advocates and the GAO say the numbers of parents
forced to trade custody for care is actually much
higher, since 32 states did not respond to the survey
and no formal tracking of such placements occurs.
Another survey, by the National Alliance for the
Mentally Ill (NAMI), says one in five parents of
mentally ill children temporarily gave them up to obtain
services they could not afford otherwise.
"We know that the GAO report is just the tip of the
iceberg," said Tammy Seltzer, a staff attorney at the
Bazelon Center for Mental Health Law in Washington.
"Custody relinquishment has been documented in at
least half the states in the country, but of course even
one family's being asked to make such an impossible
choice is too much."
According to the GAO, children were placed in either
foster care or the juvenile-justice system. Most are
severely mentally ill and many are violent, disrupting
home life and making it virtually impossible for parents
to care for siblings.
"It seems like a medieval punishment," said Glenda
Fine, president of Parents Involved Network of
Pennsylvania, an advocacy group.
Even more troubling for parents is that some states
compel them to publicly state that they are abusing or
neglecting their children just to get them into the
foster-care system. Once they give them up, parents may
have to win a judge's approval to get the children back.
"Families do this out of desperation," said Trina
Osher, a spokeswoman for Federation of Families for
Children's Mental Health, who relinquished her son for
five years. "They treat you like an unfit parent and
your child as a problem child. This is not the reason
you're there."
For parents who have tried navigating the fragmented
and overburdened mental-health system, giving up custody
can seem like their only choice. Instead of helping, the
practice often exacerbates already stressful situations.
"It's very hard to take," Osher said. Her son, who
was 10 when she gave him up so he could be treated at a
residential center, "felt abandoned, like the family had
just thrown him away."
Her other children were fearful they would be sent
away, too. "It was destructive to the family bond. It
took us many years to recover from it. We're still
working on it," she said.
Darcy Gruttadaro, director of NAMI's child and
adolescent action center, said taking emotionally ill
children from their parents is "therapeutically the
worst possible outcome."
Thirteen states have outlawed custody relinquishment
of children in exchange for mental health care. In 1992,
Pennsylvania banned the practice, and allows any child
diagnosed with a disability to receive Medicaid
coverage, regardless of income, said Joan Erney, deputy
secretary for the state Office of Mental Health and
Substance Abuse Services.
Still, according to the GAO survey, 71 children in
the state were relinquished to foster care for
mental-health treatment in 2001.
Children "still fall through the cracks," Erney
acknowledged, but she said the numbers in the report
"seem high to me."
"We do not under any circumstances permit counties to
suggest or offer as an option that families give up
custody to access mental-health services," she said.
New Jersey, which did not respond to the GAO survey,
also instituted changes and in 2000 launched the
Children's System of Care Initiative, which ensures that
families get mental-health services "without getting
involved in child-protective services at all," program
director Julie Caliwan said.
Though the program was scheduled to be in place
statewide by January, because of funding problems it has
been rolled out in only seven counties -- Burlington,
Monmouth, Union, Cape May, Atlantic, Mercer and Bergen.
Elsewhere in New Jersey, from 1,600 to 1,700 children
are in foster care for mental-health treatment, Caliwan
estimated.
Six million to eight million children in the United
States have emotional or mental disorders, about half of
which are serious and persistent, according to the
Federation of Families.
The custody dilemma arises because most private
insurance plans put strict limits on mental-health
coverage. Malka's, for instance, has a 30-day cap on
psychiatric services.
Health plans typically pay for outpatient therapy,
some hospitalization and medications, but not the
intensive services children with severe behavioral
problems need, Seltzer said.
Medicaid, however, will pay for long-term residential
treatment and what are known as wrap-around services,
which might include therapeutic after-school programs,
respite care, and other remedies aimed at keeping
children in their homes.
Even with coverage, implementation is erratic. Though
the federal government provides money to states for home
and community-based services for mentally ill children,
most states do not take advantage of the program.
States are more willing to pay for higher-end
therapies, such as residential treatment, than programs
aimed at keeping children in their homes, Gruttadaro
said.
"There's a culturally ingrained way of delivering
services and a reluctance to try other models," she
said, noting that only three states -- Vermont, New York
and Kentucky -- have implemented federal Home and
Community Based Waivers for mentally ill children.
Moreover, the states, which pay from 50 to 75 percent
of Medicaid costs, do not want to drive up their budgets
by adding services, she said. Too few mental-health
resources and rising numbers of children with serious
mental-health issues add to the problem.
The most difficult part for many parents is losing
control over their children's treatment and care. Malka
said she was told she would be consulted at every step
of the way "and this was just being done to qualify for
Medicaid." But she cannot visit her son or give him
over-the-counter asthma medication without his social
worker's approval.
Kathy Minnucci of Ridley Park refused to give up her
son, as his doctor and social worker recommended, after
her insurance carrier declined to pay for continued
residential care. Instead, she sued the company and won.
"They say, 'We're not telling you you have to give up
your parental rights." Oh, yes, you are," said Minucci,
the mother of six.
Parents are often blamed for their children's
problems, she said. At one hospital, she was told that
her son, who has stabbed animals and banged his
brother's head against a wall, "needed nurturing and
parenting."
" 'What do you think I was doing for years before the
child ended up in his first residential?'" she said she
told them. "That's a slap in the face of the parents."
Parents and advocates are looking for relief from the
federal government in the form of the Families
Opportunity Act, which would open Medicaid coverage to a
greater number of mentally ill children, and the Paul
Wellstone Parity legislation, which would force
insurance companies to make physical- and mental-health
coverage more equitable. Both are pending in Congress.
But those who are familiar with the issue say
legislation will not address the root of the problem: a
misunderstanding of children's mental illness. Many
people still feel that mental illness is really
emotional weakness or willful disobedience, advocates
say.
After all, said NAMI's Gruttadaro, if a child were
ill with asthma or another condition requiring
hospitalization, "we wouldn't think of suggesting that
services weren't available unless their parents gave
them up. With mental illness, it's often considered bad
parenting."
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