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Forgotten Patients: The Mentally Ill
National Conference of State Legislatures
April 1, 2000
Forgotten Patients: The Mentally Ill
Reaching Parity with Physical Illnesses
The Mood Is Changing Across the Country
How to Reach the Remaining Multitudes
The Depressing Facts of Runaway Costs
Great Differences Across the States
The Feds Are Thinking, Too
Children's Mental Health Needs Often Overlooked
New Pharmaceuticals Offer Hope of Recovery-At a Cost
Forgotten Patients: The Mentally Ill
Thousands of people suffer some form of mental illness that insurance doesn't cover. Some states
are trying to change that.
By Garry Boulard
Texas Representative Garnet F. Coleman was not really surprised to wake up one morning in 1994
as an inpatient at the Menninger Clinic in Topeka, Kan. For years he had been suffering from
depression and was now preoccupied with the goal of at long last finding a way to, at least, manage
his condition.
The surprise came when he discovered a young woman patient on suicide watch who was soon sent
packing.
"Do you know what suicide watch means?" asks Coleman, who was elected to the Texas Legislature
in a special election in 1991. "It's when there are people sitting outside the door of your room,
running in whenever they hear some noise, interrupting your sleep with flashlights in your eyes,
trying to make certain you haven't killed yourself yet."
The woman was forced to leave the renowned clinic, Coleman recalls, because her insurance did not
cover her illness.
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"I never realized until then how unjust these things can be," says Coleman. Right then, he resolved
that he would do something to help the millions of people who are forced to face debilitating and
enormously expensive illnesses of the mind alone, almost always without the support of insurance.
REACHING PARITY WITH PHYSICAL ILLNESSES
Returned to the Legislature after at long last getting a diagnosis-the lawmaker suffers from a mild
form of bipolar disorder, which is easily controlled with daily medication-Coleman began to lay the
groundwork for what would eventually become an historic piece of legislation. He wanted health
insurance "parity" for the treatment of mental illnesses on a par with benefits for the treatment of
other diseases.
Texas already had such a law but it covered only state employees. Coleman wanted to expand it to
everyone who works in the big state. Although not parity, his successful 1998 law provides a
substantial amount of minimum mandated benefits for inpatient days and outpatient visits. With it's
passage, Texas became one of the largest of more than two dozen states to address the issue of
what to do about the thousands of people who suffer from different forms of mental illnesses and
are unable to get coverage for treatments and medication.
"Just look at it this way-it is really nothing more than a question of fairness and democracy,"
declares Virginia Senator Edward Houck, who last year sponsored one of the nation's few full parity
laws that includes treatment not only for a variety of mental illnesses, but chemical dependency
too.
"In a broad sense this has been discrimination of the very worst sort," says Houck, whose tenacity
on the subject is clearly seen in the long road his legislation traveled. He began to work on a parity
bill in 1994, boning up on the complex interpretations of what constitutes a mental illness, and,
even more thorny, whether dependence on a chemical substance is rooted in willfully bad behavior
or a mind-induced need.
THE MOOD IS CHANGING ACROSS THE COUNTRY
The Virginia legislation, coupled with partial parity bills passed in New Jersey and California, give
evidence of a trend, contends Bob Carolla, who monitors state lawmaking on mental health issues
for the National Alliance for the Mentally Ill in Arlington, Va. "The overall legislative pattern has all
been on the up side," he says.
With the recent enactment of a New Mexico law, 21 states now require full parity, according to
NCSL's Health Policy Tracking Service.
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In some cases, the new laws have been sparked by the example of legislation in other states.
"Two things really helped our cause in Oklahoma," contends Senate President Pro Tem Stratton
Taylor, who sponsored a successful parity law last year.
"The first thing was that we were able to get our hands on a report done by the Rand Corporation
that showed that, although there was a very tiny increase in insurance premiums as a result of
similar legislation elsewhere, the increases were more than offset by the savings of having people
not miss work or not being institutionalized once they got the treatment they needed," he says.
But the second motivation for Oklahoma lawmakers was nearly as powerful. "Texas has just passed
its bill, and it was signed by Governor Bush," says Taylor. "That had a real effect on our lawmakers
who decided that if Texas could do it, so could we." In fact, Oklahoma passed broader coverage
than Representative Coleman managed to get through in Texas.
HOW TO REACH THE REMAINING MULTITUDES
Despite such advances, however, many mental health advocates worry that millions more
Americans are without coverage. According to the first-ever surgeon general's report on mental
health, released in December, some l5 percent of the country's population at any given time use
some form of mental health services.
And those services, according to Surgeon General David Satcher, take in a growing array of
alternatives: "including," he remarked at the time of the report's release, "medications and shortterm psychotherapy and community-based supportive services."
But the surgeon general's report also contends that financial barriers and the social stigma of
seeking help serve as deterrents to care. "While mental disorders may touch all Americans either
directly or indirectly, all do not have equal access to treatment and service," says Satcher. "We
need to ensure that mental health services are as widely available as other services in the
continuously changing health care delivery system."
"I think the biggest obstacle that still remains centers around the question: 'If we let the lid off, just
what are we letting out?'" contends Joan Dodge, a senior policy associate for the Technical
Assistance Center for Children's Mental Health at Georgetown University. "Many lawmakers almost
instinctively feel that this could be an area of enormous and unanticipated expense, thus they really
just want to stay away from this issue altogether."
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Pamela Greenberg, executive director of the American Managed Behavioral Healthcare Association,
points out that there is a potential for a cost increase associated with mental health parity, but if the
benefits are provided under managed care they will be relatively low.
If you move from a fee for service plan to a managed care plan then you are likely to have a cost
savings, but if you already use managed care and implement parity there will be a cost increase. "In
the end," she says, "the cost savings will be to employers and families."
THE DEPRESSING FACTS OF RUNAWAY COSTS
A legislative study of state services for the mentally disabled found that it would probably cost more
than $500 million by 2004 to pay for the various services Virginia's mentally ill might need.
"That is an example of how expensive things can get," says Dodge.
Concerns about runaway costs prompted individual HMOs, some members of the state's insurance
industry and the Virginia Chamber of Commerce to wage a campaign against Houck's bill. Sandy
Bower, senior vice president of the state's chamber, said small business employers were "deeply
concerned" about "the expansion of coverage. We just thought the language was too loose and
would ultimately have a terrible impact on costs."
"We've heard about other states who have had a negative experience with the issue of costs,"
continued Bower, "and we wanted to avoid that in Virginia."
But Houck countered such arguments with studies and medical research that, he says, "very much
showed that you can treat mental illnesses and that once you do these people can live and
function."
In other words, there is no reason today why anyone with any sort of mental illness should not have
their problem solved or greatly alleviated by modern science, he says.
That argument, thinks Houck, brought on board wavering lawmakers who worried that the state
would be covering people who would never get better, no matter how much money it spent. Houck
then distributed additional data from states that have already enacted parity laws showing no
appreciable increase in either costs to the state or insurance premiums.
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"I think if any legislature is going to attempt to tackle a loaded issue like this, they have to have
before them two things-competent medical research, which clearly shows mental illnesses can be
treated, and economic studies that show the costs are really minimal," adds Houck.
Bower, however, who also serves as a lobbyist for the Virginia Chamber of Commerce, said a real
effort was made to exempt businesses with 25 or fewer employees from Houck's bill.
Although she said she was satisfied with the final legislation, Bower remains convinced that the
issue of runaway costs is hardly a false one. "The business sector, when confronted with a bill like
this, has to make extra certain that there is an exact definition about what kind of system of care is
going to be established and whether or not there is good, reliable science to back up their
arguments," says Bower.
"If the people who want full or partial parity can't come up with reliable data, I don't think anyone
should support their cause, no matter how well intended it is," adds Bower.
Opposition to parity and mandated benefits also comes from other groups who fear increased
insurance costs, financial burdens on small business owners and the rising numbers of uninsured.
Sue Laudicina, director of research for the Blue Cross Blue Shield Association, says her group
opposes parity for mental health benefits because of past experiences. Whenever benefits are
mandated, a new benefit is offered or limits are removed, she says, utilization goes up dramatically.
Even a small cost increase can force small business owners to drop insurance coverage for their
employees, she says.
GREAT DIFFERENCES ACROSS THE STATES
Because of the complexity of the issue, coverage for mental illness varies greatly from state to
state. "It has sort of a patchwork pattern," says Georgetown's Dodge. "What one state might be
strong in, another state does not address at all."
Only six states-Minnesota, Connecticut, Maryland, Virginia, North Carolina and Vermont-have laws
covering treatment for both mental health and substance abuse. But Vermont's law is held up by
Dodge and other mental health advocates as a model because it covers all disorders as defined by
the International Classification of Disease Manual's diagnostic categories pertaining to alcohol or
substance abuse.
Dodge and others have also taken heart from a recent report by the Vermont Health Care
Association, which said that the costs of actually implementing legislation on substance abuse and
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mental health parity has been less than a projected 3.4 percent. "That is very good news," remarks
Dodge.
Carolla of the National Alliance for the Mentally Ill thinks that as the momentum to address mental
health at the state level increases, laws will become both more inventive as well as comprehensive.
"When the states first tackled this, they did so tentatively," Carolla says. "But by last year,
especially with Virginia-a big victory for mental health advocates-the momentum has been in the
direction of doing something bigger, of trying to cover more of the bases."
THE FEDS ARE THINKING, TOO
For that reason many of the same mental health advocates are hopeful that more adventurous state
legislation will actually be used as a model for the federal government.
Legislation introduced a year ago by U.S. Senators Pete Domenici of New Mexico and Paul Wellstone
of Minnesota may do just that, but is still sitting in the Senate Committee on Health, Education,
Labor and Pensions and has not even had a hearing.
Domenici and Wellstone's new legislation is intended to build on their historic 1996 DomeniciWellstone Mental Health Parity Act, which required covered health plans to provide parity for
lifetimes and annual dollar caps for mental illness treatments that are equal to other surgical or
medical treatments.
The new legislation would bar health plans from setting limits that are different from those already
established for other treatments. Those limits, according to the senators, often mean higher patient
copayments, fewer hospital days, higher patient deductibles and fewer outpatient visits.
Although federal parity is anticipated by some, Coleman of Texas says that in the meantime, states
should be willing to lead the way, a journey that he contends can be made lighter if lawmakers are
willing to make what he describes as "the two big leaps."
The first leap is to look at the experience of other states that have already passed parity laws.
"Study their financial data, and you will see in almost every case there has been only a minimal
increase in costs, at the most."
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The second leap concerns changing attitudes: "You have to look at mental health problems as
illnesses, just like anything else," says Coleman. "And once you do that, everything else begins to
make sense."
By way of illustration Coleman points to his own experience. In 1994 he was so sick he needed to
be institutionalized to get help, help which he found through treatment and medication. The next
year, back at work in Austin, he was voted one of the 10 best legislators in Austin by Texas Monthly
magazine.
"Getting the help I needed made all the difference," says Coleman. "I don't see how we, as
responsible lawmakers, can deny that same opportunity to others."
Garry Boulard, a frequent contributor to State Legislatures magazine, is a freelance writer in New
Orleans, La. Tracy Delaney, NCSL's mental health expert, contributed to this story.
©2000, National Conference of State Legislatures. All rights reserved.
Children's Mental Health Needs Often Overlooked
If there is one problem with establishing programs for the mentally ill that goes beyond the everpresent question of money, it's how those programs have a way of overlooking one of the most
troubling groups in the population: children with mental illnesses.
"Generally adult mental health has always been regarded as more important than anything having
to do with kids," says Joan Dodge, senior policy associate with the National Technical Assistance
Center for Children's Mental Health at Georgetown University. "It could be because the problems
stemming from adult mental illnesses are more visible-or from the opposite perspective, that
children's issues are less."
According to the National Institute of Mental Health, one in 10 children and adolescents suffers from
a mental illness serious enough to cause impairment. Suicide among young adolescents aged 15 to
24 is today the third most common cause of death; while the overall suicide rate has more than
doubled in the past two decades for some of the youngest children between the ages of 10 to 14.
According to the massive, recently released surgeon general's report on mental health, some 13
percent of children and adolescents between the ages of 9 and 17 suffer from anxiety disorders; 6.2
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percent are afflicted with mood disorders; and another 2 percent experience problems from
substance abuse.
The percentages, said the report, "translate into a total of 4 million youths who suffer from a major
mental illness that results in significant impairments at home, at school and with peers."
But the problem for years for many health care professionals has been that children's mental
illnesses are almost invisible, even to adults who care. "Despite similarities, childhood depression
differs in important ways from adult depression," the surgeon general's report continues. "Psychotic
features do not occur as often in depressed children and adolescents. And when they occur,
auditory hallucinations are more common than delusions."
Fears of separation, a reluctance to meet new people and what the report calls "somatic
symptoms," such as stomach aches and headaches, tend to be seen more often in children than in
adults who suffer from depression.
Dodge contends that the emergence of what is called "system-building" at the state level has
proved to be one of the most effective ways of dealing with children's mental illnesses. Systembuilding, according to Dodge, simply means bringing together the resources of the medical,
educational and even criminal justice systems to create comprehensive programs targeted
specifically at the young.
"It is no longer a matter of just getting a kid into some kind of program," Dodge explains, "but one
of helping to be a part of a coming-together process in which a variety of resources, including
formal ones like regular therapy and informal ones like recreation and Big Brother programs, are all
brought together."
Although Dodge and other advocates have been working with what she calls "a small handful" of
states on children's issues, she is particularly enthusiastic about the Vermont Federation of Families
for Children's Mental Health program. It is a statewide family-run organization, fully supported by
the legislature, which provides information, referrals and support to families with children who have
mental health problems.
If the states want to tackle the issue of children's mental health, thinks Dodge, they need to "look
within their already existing structures and find the people who are most interested in or have
already done work on mental health issues."
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In many cases, laws pertaining to children's mental health issues are already on the books. They
can be the start for new legislation that brings together the various state programs that already
deal with children on a daily basis.
"That's what we mean when we refer to trying to establish systems of care," Dodge adds. "It's
simply a matter of working with the programs most states already have and coordinating their
services.
"This really isn't a matter of creating entirely new systems and starting from scratch," she contends.
"Usually, it's more like reforming the systems within a state that already exist. We're just trying to
make them work better and with each other."
©2000, National Conference of State Legislatures. All rights reserved.
New Pharmaceuticals Offer Hope of Recovery-At a Cost
In the last 15 years, new medications have changed the face of treatment for mental illnesses and
raised a host of issues about cost and access for states, health care providers and families.
The drugs now on the market-and the 85 new ones that are under development-are often much
more effective at alleviating symptoms than older drugs, with fewer and less severe side effects.
They include drugs to treat depression, such as Prozac, Zoloft and Paxil, and anti-psychotics, such
as Clozaril, Risperdal, and Zyprexa.
However, these new drugs are much more expensive than their predecessors, and the high prices
are putting pressure on the budgets of state Medicaid agencies, state and county mental health
departments, and prisons.
The cost differences are huge, particularly when estimated for a whole group of people who could
benefit from the drugs. The annual cost for one patient of Haldol, an older drug used to treat
schizophrenia, is either $570 or $1,300, depending on the severity of the symptoms. That compares
to $6,200 for Clozapine, one of the newer anti-psychotics. Similarly, the annual cost for a generic
version of an older drug used to treat depression, Tofranil, is about $200. Prozac, the best known of
a new family of anti-depressive medicines called selective seratonin reuptake inhibitors, costs about
$800 per year.
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As for the people who need these drugs, about one in five adults has a mental health problem or
disorder. About 16 percent of adults have an anxiety disorder; 7 percent suffer from a mood
disorder, such as major depression or bipolar disorder; and just over 1 percent have schizophrenia.
Ironically, many of the people who would benefit the most from these drugs can't afford them and
don't have insurance coverage for them. Adults who are ill enough to qualify for federal disability
payments are insured by Medicare, which has no prescription benefits. Some states have programs
to help people without drug coverage to buy them, but most of these are targeted at low-income
elderly, not the mentally ill. And most people suffering from serious, chronic mental illnesses such
as schizophrenia are unlikely to have the types of jobs that offer private insurance that includes
drug coverage.
Most mentally ill people who are uninsured either rely on local mental health departments for
treatment and medication or go without care. As a result, community mental health providers have
faced skyrocketing costs: Virginia's system, for example, experienced a threefold increase in just
three years as drug costs rose from $1.5 million in 1990 to $4.5 million in 1994.
Medicaid offers greater access to these new drugs than many other insurers. All state Medicaid
programs provide coverage for pharmaceuticals. A federal law in 1990 opened up state Medicaid
formularies-lists of drugs the program will pay for-by requiring that they must include all drugs
manufactured by companies that give states rebates. Medicaid drug costs shot up more than 15
percent per year after that, from $4.4 billion in 1990 to almost $12 billion in 1997. State Medicaid
agencies have moved to limit their costs in a variety of ways, including limiting the number of
prescriptions a person can get at one time, requiring prior approval or mandating substitution of
generic drugs.
Some cost increases for drugs in the Medicaid and community mental health programs, however,
may be offset by savings in the state mental health budget and an immeasurable improvement in
the quality of life and productivity among the mentally ill.
Thousands of people in this country, without these new drugs, would be unable to function outside
of a state mental hospital or residential treatment facility; the costs of the drugs may be high, but
they are far lower than hospital care.
Once outside the state hospital system, however, patients may have difficulty gaining access to the
very drugs that allowed them to leave in the first place. And if they do receive the medications they
need to live in the community, they present states, local agencies and families with a new set of
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tasks to help them find employment, maintain relationships and manage their lives. These new
medications, coupled with supportive services in the community, make recovery a meaningful term
for people who would almost certainly have lived much of their lives in institutions decades ago.
-Shelly Gehshan, NCSL
©2000, National Conference of State Legislatures. All rights reserved.
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