New York Times - July 9, 2001
By Gaps in Treatment of Mental Illness
By CAREY GOLDBERG
July 8 The 16-year-old girl had needed help, no question. She was
throwing chairs, she was taking rides from strangers, she was acting
suicidal. Finally, she ended up in a psychiatric hospital, where, her
mother says, the staff effectively saved her life, stabilized her, worked
on her bipolar disorder.
But once in, the girl could not get out. Not for months after the staff
thought she was ready to go. No matter how she cried. She had joined the
ranks of thousands of mentally ill children and teenagers in the country
who, doctors, advocates and officials say, are trapped in psychiatric
hospitals and in other institutions for lack of treatment programs
The problem is so widespread that it has prompted recent lawsuits
demanding more outpatient treatment in states from New York to Idaho to
California. And experts say it is only one of the more visible indicators
of a broader, deeper problem, yawning gaps in the treatment of mental
illness among the nation's children.
Five to 10 percent of American children have serious mental health
disorders, federal officials say. About 60 to 70 percent who have mental
health disorders do not get the treatment they need, said Gary De Carolis,
chief of the child, adolescent and family branch of the federal Center for
Mental Health Services. But a surgeon general's report released in January
offered an even higher estimate, 80 percent.
Experts say it is unclear how many children are not only under- treated
but actually trapped in the mental health system, victims in large part of
poor record-keeping and differences in the process from state to state.
The National Mental Health Association is working to quantify "unmet
need" in 13 states and is struggling with variances in data
collection and systems, said Maril Olson, the association's director of
"I don't know of any states that would say, `We are doing really
great,' " Ms. Olson said. "Every state would say `We don't have
enough funding, we don't have enough services.' "
Here in Massachusetts, advocates and doctors have been documenting
several aspects of what they call the "stuck kid" problem.
There are the children who must wait for hours in emergency rooms while
in full-blown psychiatric crises. There are the "boarder kids,"
children stuck for days or weeks or in extreme cases, months in
pediatric wards because there is no place for them in a psychiatric ward
There are the "wait-listed kids," waiting months for
outpatient therapy or case management. And there are the "stuck
kids" themselves, usually about 100 of them at any time in the state,
according to official figures, who are ready for discharge from
psychiatric hospitals but cannot leave for lack of outside treatment
Dr. Josh Sharfstein, a Massachusetts pediatrician who has documented
the state's "stuck kid" problem among children cared for by the
child welfare system here, found that from last October to March, stuck
patients spent 15,796 days or more than 43 years of unnecessary
time in hospitals, 33 percent longer than in the previous six months.
"The systems to take care of the most severely mentally ill kids
are completely broken," Dr. Sharfstein said. "If you have a
heart ailment in Massachusetts, you're going to get excellent care, but if
you're a child with mental illness you could have the best insurance and
wind up spending three days in the emergency room."
Massachusetts has more psychiatrists and social workers per person than
any other state and is second in the number of psychologists, said the
state's mental health commissioner, Marylou Sudders. "Stuck
kids" are a high priority for the whole administration, Ms. Sudders
said, and the state added $10 million to its mental health budget of
$584.6 million last year to deal with the problem. And yet it persists.
Ms. Sudders attributed the problem to an overall crisis in mental
health treatment, and she cited these other factors: a staffing shortage
so severe that the state can actually operate only 8 of 10 beds for
mentally ill children it has the money for; a shortage in psychiatric
wards; and a boomlet in the state's adolescent population.
Whether caused by demographics or other societal shifts, a sharp rise
in juvenile psychiatric emergencies has been reported in many states,
including Connecticut and New York.
Mental health advocates also mention the effect of managed care on
mentally ill children. Private managed care, experts say, tends to reduce
coverage for mental health, and parents often wait too long before seeking
help. In some states, managed care programs for children covered by public
money have so cut the amount of treatment received that state governments
have abandoned the programs.
Whatever the causes, the gaps in the system compound the pain of
parents who are coping with their children's illnesses, and often, experts
say, exacerbate the illnesses themselves.
"If a child has appendicitis or a diabetic condition, you're going
to get them in to the hospital that day," said Pamela Sepe, a
registered nurse and a mother of four, including a 14- year-old son who
has bipolar disorder and obsessive-compulsive disorder. "It's just so
sad, because they have an illness too, but it just affects a different
When her son had a recent crisis and began flying out of control, Ms.
Sepe took him to the emergency room, as his doctor had instructed her,
only to be told after nine hours of waiting that there were no psychiatric
adolescent beds anywhere in the state for him. She had to take him home.
Most children and teenagers stuck in psychiatric hospitals tend to be
wards of the state, many unable to return home. But Ms. Sudders said the
problem extended to children covered by private insurance.
When the children covered by public money get stuck in psychiatric
hospitals, parents and experts say, that backs up the whole system.
"All along the spectrum there is bottlenecking or a logjam,"
said Lisa Lambert, assistant director of the Parent/Professional Advocacy
League, which advocates for mentally ill children. "It's all
The stuck patients also burden the psychiatric hospitals, taking up
beds needed by others while the hospitals lose money because the state
does not usually pay full rates when a patient's stay is no longer
considered clinically necessary.
For all the problem's complexity, there seems to be a consensus about
the solution: more mental health services must be provided in communities,
so that mentally ill children could live at home while still receiving
intensive treatment and oversight by professionals.
The federal Center for Mental Health Services has been giving tens of
millions of dollars in grants each year to encourage such programs for
several years, and they now exist in 67 communities, Mr. De Carolis said.
The programs bring together all the agencies that normally deal with
mentally ill children including the juvenile justice system and child
welfare offices to make them collaborate rather than try to stick each
other with the bills for a child's care.
They generally create interagency teams and strive for
"wrap-around" treatment wrapping the services around the
child instead of making the child negotiate a maze of agencies. They often
include staff members who can spend extensive time in the child's home,
and respite care when parents are at wit's end.
The programs have already proved themselves, Mr. De Carolis said,
cutting hospitalizations and delinquency, and saving money. But they often
meet some resistance. A therapist used to 50-minute hours, he said, might
balk when told to go into schools and homes and act as part of the
community; so might the director of a 140-bed treatment center when the
emphasis shifts to intensive at-home services.
Lawsuits around the country on behalf of children stuck in the system
generally demand and have often received more of such wrap- around
In May, a federal judge in Los Angeles ruled in favor of the
plaintiffs, who represented more than 100 children in the state's mental
hospitals and thousands in other locked facilities, in a class action
lawsuit demanding wrap-around services.
In New York, a class action lawsuit on behalf of hundreds of children
that suit says are stuck in institutions is expected to begin litigation
soon. At any time, the state has a waiting list of about 200 children who
need residential treatment, the plaintiffs say, and has failed to create
enough community services for them.
With waits of 6 to 12 months, "Children are really
suffering," said Nancy Rosenbloom, staff lawyer at the Legal Aid
Society, which is bringing the suit. "There are children at home
getting no services; children in foster care not getting mental health
services; children in the hospital who don't need to be in the hospital;
and children in jails and prisons who are there because judges feel they
need some kind of residential care."
In Massachusetts, the threat of a similar suit has been brewing; the
state has been negotiating with patients' advocates, who sent notice of
their intent to sue a month ago.
Compared with other states, "Massachusetts has tons of group
homes," said Steven Schwartz, executive director of the Center for
Public Representation, which would bring the suit. "We have more
hospital beds than most states. What we don't have is home-based support
that allows people to leave hospitals for home. That's why we have this
problem of stuck kids."
And the real number of stuck children in Massachusetts alone is
probably in the thousands, Mr. Schwartz said, if those stuck in state
hospitals and other facilities, not only private hospitals, are counted.
As for the 16-year-old girl with the bipolar disorder, she needlessly
spent about four months in the hospital, crying to her mother on the
phone, "You've got to get me out of here!" She finally did get
out of the hospital last week, but not to go to a residential treatment
program. She simply went home, despite her mother's misgivings. "I
finally had to get her out myself," her mother said. "She would
still have been there."