Feature 3
“Crippled.”
Today, the word has the effect of fingernails on a chalkboard. It is an anachronism. Outdated.
Offensive.
The same holds true for “handicapped.”
Most of us simply feel it is inappropriate and insensitive—not to mention inaccurate—to use
language that denies people an equal place in our society by referring to them in terms that put
a random medical condition ahead of their intellect, their abilities and their basic humanity.
Why, then, is it so easy for us to call the guy who cuts us off in traffic a “lunatic?”
Why do words like “crazy,” “demented,” “deranged” and “insane” flow so effortlessly off our
tongues without so much as a second thought?
Why is it acceptable to call anyone who makes us nervous or uncomfortable a “psycho?”
According to Ellis Katsof, it is the yawning chasm between how our society thinks about its
citizens with physical illnesses, injuries or diseases and how it perceives its citizens with mental
illnesses that virtually guarantees the former can look forward to world-class medical care and
a recovery surrounded by well-wishing family members and friends while the latter are likely to
suffer for years—their condition untreated, while those closest to them turn away from them
out of fear and shame.
Katsof is the executive director of cash-strapped Niagara Child and Youth Services (NCYS), the
Niagara Region’s only accredited provider of mental health services for those under the age of 18
and their families—services that include emergency psychiatric treatment, art and play therapy
and educational programs for both children and parents covering topics ranging from problemsolving
skills, good decision making, relationship building and developing coping mechanisms.
The quiet efficiency of the NCYS offices on the
Schmon Parkway and the bright colours of a children’s
play area in the lobby serve as the brave face
of an organization pushed to its very limits by a
chronic scarcity of funding and the sheer enormity
of its task.
Mental health researchers estimate that one in
five children and youth in Canada and the United States will struggle
with a diagnosable mental health disorder, a statistic that translates into
19,000 cases in the Niagara region. In fiscal 2008-2009, NCYS staff
saw just 4,285 of them.
On March 9, Kathryn O’Hagan-Todd, the director of children’s
services for the Niagara Region, told Public Health and Social Services
Committee members that the situation in Niagara is “dire.” According
to O’Hagan-Todd, children in the Niagara and Hamilton area wait an
average of 19 days for an emergency psychiatric visit and 66 days to
see a mental health specialist. Those numbers rank first and second in
Ontario, respectively.
While the reasons for the gap between incidence and treatment are
complex and can include issues ranging from government funding to
the time-consuming nature of some mental health treatments, Katsof
vehemently asserts that the single greatest challenge to mental health
care can be summed up in a single word: stigma.
Stigma is the blanket term used by mental health care providers
throughout North America to describe the almost impenetrable culture
of fear, discrimination, neglect and shame that dominates so many
people struggling with their mental health. “Our perception of people
with mental illness is that they’re unskilled, unreliable and violent,” said
Katsof. “How sad. We know so little about their lives.”
Stigma is deep-rooted in western culture and dates back at least to
the late Middle Ages, when the first state-run “insane asylums” were
established to separate those with mental illnesses from their neighbours
and society as a whole. In 1850, when the government of Canada West
opened its new hospital for people with mental illnesses in Toronto, its
first name was the Provincial Lunatic Asylum.
“And we wonder why there is a stigma,” says Katsof incredulously.
Today, the connection between violence and mental illness is a staple
of our popular culture. Consider the terrifying image of Dr. Hannibal
Lecter in his restraints and face shield in The Silence of the Lambs or the
homicidal, cackling Joker and his fellow villains in Batman lore. Even
the image of the asylum survives. Lecter was housed in the stone-walled
“Baltimore State Hospital for the Criminally Insane” while Batman is
forever returning the Joker and his cohorts to the confines of Gotham
City’s gloomy “Arkham Asylum.”
A 2008 study designed to gauge Canadians’ attitudes about mental
illness discovered that 25 per cent of Canadians admitted to a fear of
people with a mental illness, 42 per cent admitted they would no longer
socialize with a friend who was diagnosed with a mental illness and only
16 per cent would knowingly marry someone with a mental illness.
The reality, explains NCYS Director of Clinical Services Bill
Helmeczi, is that a mental health issue in a child or youth might be
nothing more than the lack of development of a certain coping mechanism
or resiliency needed to deal with the common anxieties and feelings
of depression we all experience in our lives. “We learn certain
strategies for coping with life,” says Helmeczi. “Sometimes a child for
whatever reason just doesn’t learn them.”
Research shows that organizations like NCYS using scientifically
tested and proven therapy techniques can have a success rate as high as
75 per cent when it comes to treating children with the most common
mental illnesses: depression, anxiety, conduct or behaviour disorder,
attention deficit hyperactivity disorder (ADHD), eating disorders,
schizophrenia and bipolar disorder.
Unfortunately, says Katsof, the stigma surrounding mental illness is
so strong that many parents are reluctant even to inquire about help
out of fear that their children will be ostracized at school or that they
themselves will be blamed for their child’s illness. The Mental Health
Commission of Canada says 40 per cent of Canadian parents admit
they would never tell anyone their child has a mental illness. “Parents
are afraid to reach out for help, even though we know treatment works,”
explains Katsof. “So many people suffer needlessly.”
Sarah Cannon knows exactly how those parents feel.
Cannon is the chair of the parents group at NCYS and also the executive
director of Parents for Children’s Mental Health, a provincewide
support and advocacy group for parents raising children struggling with
their mental health.
When Cannon’s daughter was four years old, she was diagnosed
with bipolar disorder, a mental illness that causes radical mood swings
between euphoria and extreme depression. “I felt like the worst parent
in the world,” recalls Cannon. “Because nobody was talking about this,
I felt alone and isolated. Everybody else’s child seemed fine and nobody
wanted to have anything to do with me or my daughter.”
Katsof uses cancer to illustrate the differences between our society’s
perceptions of physical illness and mental illness. “I’m old enough to
remember a time when nobody talked about cancer either,” says Katsof.
“Everyone called it ‘The Big C’.”
Decades later, we all still fear a diagnosis of cancer, but the stigma
has evaporated. Everybody talks about cancer. Events like the Canadian
Cancer Society’s Relay for Life raise millions of dollars for cancer
research while cancer survivors are feted as heroes. A number of cancer
fundraising campaigns in North America depict cancer survivors
proudly displaying jagged surgery scars or smooth, bald heads resulting
from chemotherapy treatments.
Children with certain mental illnesses and their parents are often
forced to endure a second type of stigma as well: the belief that ADHD
and other behaviour issues resulting from mental illness are the result
of permissive or negligent parenting and that strict discipline such as
spanking would address the issue. In its eighth annual National Report
Care on Health Care published in 2008, the Canadian Medical Association noted that as many as 46 per cent of Canadians felt that people
use the term “mental illness” as an excuse for bad behaviour.
Cannon sighs at the mention of such attitudes. “My daughter just
turned 13,” she explains. “I know the difference between normal
teenage behaviour and a psychotic break. I know when my daughter is
in control and when she isn’t.”
Katsof has spent the last 30 years of his life fighting for the emotional
well-being of others as a social worker, but he is no pie-in-the-sky
idealist. He describes himself as a realist and he uses terms like “business
model” and “best practices” when discussing his management of NCYS.
He says there is a very strong connection between
stigma and funding for organizations like NCYS.
Because so many families living with mental
illness suffer in silence, he contends they simply
don’t register as a strong constituency under our
political system, and thus there is no significant
pressure on politicians to amend or otherwise improve the system.
“Stigma is holding many of us back from getting help, but it’s also
holding us back from getting funding,” says Katsof.
Treatment of child and youth mental illness in Ontario was the
responsibility of the Ministry of Health until the late 1970s, when
it was transferred to the Children’s Services division of the Ministry
of Community and Social Services. It became the responsibility of
the Ministry of Children and Youth Services when that ministry was
created in 2004.
While many of the ministry’s other programs are governed by formal
legislation—the child welfare system under the Child and Family
Services Act and the youth justice program under the Youth Criminal
Justice Act, for example—there is no government legislation in support
of child and youth mental health services.
Providers of these services in Ontario are not subject to annual
inflationary increases to their core service budgets, increases that are
customary among virtually all other publicly funded sectors, including
government employees, nurses, teachers, doctors, colleges and universities,
police and jail guards.
According to Katsof, the lack of annual funding increases to cover
inflation has had the effect of cutting the core services budget at NCYS
significantly in the last two decades.
Peter Spadoni, a spokesperson for the Ministry of Children and
Youth Services, says the McGuinty government provided “the first base
funding increase in over a decade” in 2004, but Katsof and his counterparts
in mental health agencies across the province argue that the 2004
increase served to cover the effects of inflation in that year only and did
little to address the erosion in funding caused by the lack of increases in
the years prior to 2004 and in the years that followed.
Since 1992, the government has provided two inflationary funding
increases for core children and youth mental health services totalling
eight per cent, but inflation has risen by 36 per cent, which has
amounted to a funding decrease of 28 per cent.
Cannon says the system is stretched so thin that it was “a fluke” that
her daughter was diagnosed and treated at all. When her daughter was
two, Cannon noticed there was something wrong, but endless appointments
with specialists failed to produce a diagnosis until one day her
daughter experienced a psychotic break right in the middle of a doctor’s
appointment and had to be sedated.
“Had that not happened, I’m not sure that she would be diagnosed
or even alive today,” she says.
Katsof acknowledges both the challenging
economic times and the extraordinarily difficult
decisions governments have to make in
allocating scarce funds, but he stresses that
inflationary increases will be crucial if his organization
is to continue to provide services at
their current levels. “We’re not talking about
increasing funding for new programs here,” he
says. “We’re talking about protecting and stabilizing
our base services. All we’re asking is to be
treated like any other public sector service.”
Cannon agrees. “My wish would be that our
children’s mental health would be treated equitably
with our children’s physical health,” she
said. “And with the same sense of urgency.”
The consequences for failing to address
mental illness in our society’s children and
youth could be catastrophic. A full 70 per
cent of mental health problems in adults have
their onset during childhood or adolescence.
According to Helmeczi, symptoms often
present between the ages of seven and 11.
Children struggling with their mental health
are far more likely to drop out of high school,
which greatly limits their future employment
opportunities and increases the likelihood that
they will find themselves on social assistance.
“In the busy school environment, those really
quiet kids are often seen as a blessing, but sometimes
it means those kids don’t get the help they
need,” says Helmeczi.
According to Cannon, untreated mental
illness is so uncomfortable for many youths
that they end up self-medicating with drugs and
alcohol. Many then end up in the youth—then
adult—criminal justice systems either in the
search for money to buy drugs or as the result of
falling in with the wrong crowd. Cannon says
many youths with mental illnesses are extremely
naïve due to certain cognitive and social issues
and, as a result, they are highly suggestible and
susceptible to peer pressure. It is estimated the
more than 60 per cent of youth in conflict with
the law have diagnosable mental health and
substance abuse problems.
As people with mental illnesses move into
adulthood, the toll on society is amplified. (See
accompanying Fact Box.)
Stigma is also prevalent within family and
friends, suggests Michael Kirby, chairman of
the Mental Health Commission
"The stigma, or discrimination, comes
largely from friends, family and coworkers...It's
the people who are most close to them. Family
members quietly shun you, friends disappear,"
says Kirby.
NCYS’s plans for the future are painted
with the brushstrokes of Katsof’s reassuring
combination of optimism and realism. With
the McGuinty government’s much-publicized
restraint program expected to freeze most
government budgets through 2012, Katsof
and his team are restructuring NCYS to add
capacity without adding cost—an initiative
he credits the Ministry of Children and Youth
Services for supporting.
First, they are closing down a residential
treatment facility for children aged eight to 12
and designing a program to provide the same
treatments through home care, thus serving
120 children at a time instead of 12. Next,
they are working to implement a condensed
treatment program known as the “brief solution
focus model,” which is designed to cut
down the time required for certain types of
treatment from around a year to between
three and 14 weeks.
The goal is to achieve a 20 per cent to 25 per
cent increase in access to NCYS programs by
the end of 2010.
There may even be some bright spots in
Katsof’s crusade against stigma.
According to Spadoni, the Ministry of Children
and Youth Services is looking to join the
fight against stigma. The ministry is already
working with the Mental Health Commission
of Canada, which has just launched its ambitious
Opening Minds initiative, a nationwide
anti-stigma and anti-discrimination campaign
aimed at youths aged 12 to 18 and at front-line
health care professionals such as doctors, nurses
and other hospital staff, since stigma is felt from
within the health care system itself.
Spadoni says a similar campaign may be in
the works for Ontario. “We are working closely
with the Ministry of Health and Long Term
Care and other ministries on the development
of a comprehensive 10-year mental health and
addictions strategy,” says Spadoni. “As part of
this work, we are considering an (anti-stigma
and anti-discrimination) plan for children and
youth under the strategy.”
Finally, Katsof and his team are working
on their own, made-in-Niagara anti-stigma
campaign, which is expected to launch this
fall. “We need to blow the lid off stigma,” says
Katsof. “The dollars will go where the outcry
is the loudest. Everyone in our community
needs to stand up and start talking about this.
We need to do the same thing for mental illness
that has already been done for cancer. We need
to talk about it.”
Anyone interested in donating their money, their
talents or their time to Niagara Child and Youth
Services or their new anti-stigma campaign can
email Katsof directly at ekatsof@ncys.ca. NM
