Good
morning! It is a pleasure and an honor to be with you to kick off this day of
professional development. I hope that the day ahead is educational, inspiring
and renewing.
I
was asked to speak to you this morning on your theme of mental health: why it’s
important, the challenges, and what’s being done. It’s a big assignment and as
I thought about how to tackle that assignment, I arrived at a theme of my own –
stories.
In
this room, we probably all have some familiarity with the numbers. You may not be
as surprised as the general public to learn that almost 19% of CT adults
experienced some form of mental illness in the past year, or that suicide is
the 10th leading cause death in our nation and the second leading
cause of death for people ages 10 – 34. You might not even be surprised to
learn that more people die by suicide in our country now than in car accidents
or that suicide deaths account for the majority of deaths by firearms in our
country.
You
undoubtedly know that since the closing of CT’s public mental hospitals, many
too many people with mental illness wind up in prison, homeless shelters, or on
the street, without access to treatment and support services that would help
them recover. It won’t surprise you that 64.2% of adult inmates have a mental disorder, but that fewer than half
of them receive any treatment; or that 39% of homeless individuals
report some form of mental illness and 20 – 25% meet the criteria for serious
mental illness.
These
are compelling statistics to be sure. However, I have found that the most
powerful data about mental health comes in the form of stories. And it occurred
to me that as social workers, you are collectors and brokers of stories. You
extract stories, aggregate stories, shape stories and advocate with stories. So
let me add some to your collection.
I
was invited to speak to you about mental health because this past spring,
Fairfield County’s Community Foundation published a report called Healthy
Minds, Healthy Communities. There is a story behind this report, and it
actually goes back to December 14, 2012. I’m quite sure I don’t have to tell
you the significance of that date. The tragedy that struck Sandy Hook that day
rocked our entire nation. In response to that tragedy, President Obama issued a
call for a National Dialogue on Mental Health, an initiative to convene
community conversations all around the country to gather stories that
highlighted the barriers and strengths of the mental health response, and
encourage communities at all levels to take action that would bring change and
improvement.
At
the Community Foundation we wanted to answer that call and we reached out to
the Southwest Regional Mental Health Board to help. They brought together some
community partners and with a small grant from the Community Foundation,
trained facilitators and began convening community conversations all across coastal
Fairfield County throughout the fall of 2013. Healthy Minds, Healthy
Communities summarizes the findings from those community conversations.
Conversations
were held in urban and suburban areas, in homeless shelters and in senior
centers. We had groups that reached Spanish speakers, shelter residents, and
LGBTQ youth. But despite the diversity of the groups that we brought together,
the stories that emerged were strikingly similar and 5 major themes emerged.
The
first theme that emerged was the need for increased awareness and understanding
of the signs and symptoms of mental illness. The stories went something like
this, “I realize now that I was struggling with depression, but when I got
caught using drugs and alcohol in high school, my parents thought I was being a
rebellious teen.” One group summed it up like this, “Our parents, teachers and
administrators, and children are struggling to understand and address mental
illness…we recognize the need to provide our community and schools with
education to understand and address mental health.” A social worker participating
in one of our groups said, “There needs to be intervention in the school
system. People need to stop looking away or saying, ‘It’s not my business.’”
Recommendations
for addressing this challenge included awareness building activities like
mental health fairs; training programs, like QPR (Question, Persuade and Refer)
and Mental Health First Aid; and increased early detection and access to care
through schools and doctors. School-based health centers, which operate in 22
CT communities, including Bridgeport, Danbury, Norwalk and Stamford were
recognized as an excellent model for increasing access to behavioral healthcare
for children and youth.
The
second common theme in the conversations was the need for increased awareness
of how to seek help. How many of you in the audience know what 211 is? Well,
for those of you who don’t, you are in good company. 211 is CT’s 24 hour
information line. It is a resource for finding community-based mental health,
substance abuse and other services and supports and it is also the most
expedient way to access mobile crisis services for both children and adults.
Yet, the majority of participants in our community conversations had never
heard of it. I could fill the rest of my time with stories of caregivers who struggled
first to find any treatment, then struggled to find the right treatment,
and then struggled to find treatment they could afford. In all of these
stories, parents and caregivers felt like pioneers, forging new frontiers to
ask questions and mine for information, as if no one had ever faced a challenge
like theirs in the history of mankind.
Our
groups actually set right to work on this challenge. As a result of the
conversations, some towns have already begun efforts to increase the visibility
of 211 on all town websites and public information, and to develop their own
lists of local mental health resources. Just this fall, the Southwest Regional
Mental Health Board launched its new web resource targeting teens and young
adults called TurningPointCT.org and Laurel House in Stamford is in the process
of launching Resources to Recover: RtoR.org, a website where people can educate
themselves about various diagnoses, find information about treatment options,
and get provider recommendations from the people who know them best – their
patients.
The
third theme that came out of the conversations was the need for increased
availability of services and providers who were equipped to meet the unique
needs of diverse populations. Depending on who was in the group, different
needs emerged. Young people and parents from suburban towns focused on needing
a release from the pressure cooker environment in their towns. Our Hispanic
participants shared that their linguistic and cultural differences compounded
their feelings of isolation. One of our Spanish-speaking participants described
waiting two hours for mental health services at a hospital, only to finally
meet with an employee who was Spanish-speaking, but not a clinician.
Despite the fact that Hispanic teens have higher rates of suicide and eating
disorders than their peers, participants felt that schools were inadequately equipped
to respond to them in a culturally sensitive manner. LGBTQ participants pointed
to a dearth of affirming providers, and noted that the isolation that they face
is often compounded when they have another marginalizing factor, like race,
language, culture, age or citizenship status. Senior citizens noted that
factors like physical disability, immobility, and loss of social networks
contributed to the high rates of depression and substance abuse experienced
amongst older Americans.
The
recommendations from these groups focused on promoting connectedness,
increasing access to culturally sensitive and affirming providers, and removing
other barriers to care, such as linguistic, transportation or accessibility
barriers.
The
fourth theme in the conversations was the need to increase access to quality
care. While public and private mental health resources exist throughout
Fairfield County, participants in our conversations noted multiple barriers to
access, including a shortage of Intensive Outpatient Programs, long waiting
lists, scarce services and support groups for young adults, shortages of school
social workers and school psychologists, shortages of psychiatrists, and
shortages of bilingual providers. You’re getting into the right field.
It
will come as no surprise that affordability was identified as a huge barrier to
treatment. While mental health parity is law at both the national and state
levels, it is clearly NOT a reality. Caregivers in our conversations told stories
of agonizing over having to choose a less effective treatment option or
provider, or worse yet, no treatment, because of insurance or financial
constraints. I spoke to a caregiver just recently who told me about a
conversation she had with her insurance company. The company would only pay
$3,000 of the $65,000 charged for the residential treatment required by her
seriously mentally ill child. When she challenged them on it, the customer
service representative said, “Well, he didn’t appear to be a threat to himself
or others. If he had killed himself or someone else, we would have covered it.”
I wish I was making that up.
That
story highlights another part of the parity problem that goes way beyond what
insurance does and does not cover. Unlike physical illness, with mental
illness, it’s not enough that you are suffering and in pain. Your pain and
suffering isn’t judged to be real until it is causing visible, tangible damage
to your life or the lives of others. At a recent public hearing to inform the
development of an integrated behavioral health plan, parents stood up one after
another to share the stories of their struggles to get attention for their
children. “I knew something was wrong, but the professionals kept telling me it
was normal,” one said. “As long as she was doing okay in school, nobody really
cared about our concerns,” another commented. Can you imagine a doctor
discovering an outwardly imperceptible tumor and saying, “You know what? I
can’t really see that without an MRI. Let’s wait to treat that until it’s
really big and painful.” Why do we
tolerate mental suffering to a degree that we do not tolerate physical
suffering? We’ll return to this question.
And
here’s yet another perspective on the
parity
problem. The graph you are looking at
displays the change in the number of
deaths from 2000-2010 for 6 of the top 10 causes of death in the United States.
You can see that for 5 out of the 6, deaths declined - from a whopping 42% for
HIV/AIDS to a modest 2% for breast cancer. However, during that same period,
deaths by suicide INCREASED by 31%.
This
next graph shows NIH research dollars in millions for these same six causes of
death for the period from 2009-2012. Do you notice anything? For HIV/AIDS, a
disease on which we have spent upwards of $12 billion on research over three
years, we are realizing that stunning 42% decline in the number of deaths. By
comparison, the investment in suicide research isn’t even in the same order of
magnitude as the other leading causes of death – only $165 million over 3
years. And the result? An equally stunning 31% INCREASE in the number of deaths. How
do we tolerate this?
Fortunately,
there is some movement at the state and national level that offers promise for
system-wide change. At the national level there is the recent passage of the
Excellence in Mental Health Act which represents the greatest federal investment in
community-based mental health and substance abuse treatment in history and
helps insure access to quality, effective services for people who did not have
access before.
Congress also recently passed provisions of the MODDERN Cures Act, which will allow providers to quickly begin
using diagnostics that can dramatically improve the safety and effectiveness of
prescribing psychiatric medications. And, we have seen increased funding for
the National Violent Death Reporting System. Up until recently this uniform reporting
system was only being implemented in 18 states. With the recently approved $7.5
million increase, the system will now be implemented in 32 states, including
CT. Why is this important? Almost every major cause of death has a system in
place for uniformly collecting comprehensive data about deaths by that illness.
That data has been the foundation that has helped to inform the incredible
advancements we have seen in cancer treatment, heart disease, HIV/AIDS and
other illnesses. The National Violent Death Reporting System will help us to
get that data for suicide deaths.
At
the state level the Young Adult
Behavioral Health Services Task Force is studying the provision of mental
health and addiction services in the state, with a focus on services for people
ages 16-25; and last year the legislature directed the Department of Children
and Families to produce a comprehensive, integrated behavioral health plan for
CT’s children. A draft of that plan was released just last week and the plan
will be finalized this fall.
The
last and perhaps the most consistent theme across our conversations was the
need to erase the damaging stigma faced by people who suffer from mental
illness and their caregivers; and in my humble opinion, this is a big part of
what drives the parity problem. Time and
time again, participants told stories about how the stigma surrounding mental
illness kept them from seeking treatment, or reaching out to others for support
and encouragement. I know it also keeps people from advocating for change. One
mother said, “For me, I would scream from the rooftops to get help for my daughter.
But I know for her, if she knew other people heard about her struggles, it
would be devastating, because the stigma is there and people can be so cruel.”
Other
conversation participants talked about the media’s part in perpetuating the
stigma that surrounds mental illness. A Stratford teenager said, “The media
does not portray what someone who is mentally ill is really like. They will
portray a serial killer and not talk about problems that many people can relate
to.” A mother described how that stereotype of mental illness affected her
personally, when she made the decision to send her teenage son to a residential
facility – a difficult decision she made in consultation with a psychiatrist
who had followed him for many years. “There is a perception of mental illness
that you’re ‘off the charts,’” she said. “Because his symptoms didn’t manifest
externally, parents and others in the community would come up to me and tell me
they didn’t agree with my decision.” Little did they know that her son was
having suicidal thoughts.
A
number of awareness campaigns at both the state and national level are trying
to get at this issue of stigma. The Jed Foundation, the National Alliance on
Mental Illness, the American Foundation for Suicide Prevention, The Trevor Project
and other organizations have national campaigns aimed at reducing stigma,
increasing awareness, and increasing help-seeking behaviors. Hartford Hospital has
launched a “Stop the Stigma” campaign and a Wilton student, Isabel Zayas,
started a local chapter of the national Let’s Erase the Stigma campaign at
Wilton High School.
At
the heart of the most successful of these campaigns are the stories: real,
unembellished, and heartbreakingly common. And we all have one. Yes, all of us.
Given the incidence of mental illness in our country, it’s pretty safe to say
that if you haven’t experienced some form of mental illness yourself, you know
and love someone who has.
I
have a story, too. My connection to this issue pre-dates the headline grabbing
tragedy at Sandy Hook. Mine is one of the overlooked stories. It is the story
of my beautiful, smart, and multi-talented teenage daughter, Emma, who
struggled to give voice to her troubled inner life. Together, we looked for help
from doctors, therapists, teachers and guidance counselors, only to be told her
issues were “typical teenage stuff” and “normal teenage stress.” When her grades
began to drop significantly in her junior year of high school, teachers and her
therapist were unalarmed and unresponsive. Her pediatrician was blasé about the
impact of a hormonal disorder that was keeping her from getting periods, causing
weight gain, and was known to cause depression. Her mostly silent struggle
ended five days before her 17th birthday when she took her life. My
life ended that day, too. Or at least my life as I had known it.
You
see, when it comes to mental illness, our biggest failing as a nation is that
we have failed to accurately tally the devastating cost of letting these
diseases go unfettered. We have failed to add up the cost of lives lost, of
lives shattered, and of lives spent in the shadows. If we think we can’t afford to solve this
problem, we should take stock of the price we are already paying.
But,
you all know this, I suspect. People don’t often come to the profession of
social work without a story of their own. I’m guessing that behind the passion
for change and for helping others that each of you is going to bring to your
new profession is a story that fuels that passion. And as you launch your new
careers, you will be in the very privileged position of hearing other people’s
deepest and most personal stories. Don’t ever underestimate the power of those
stories to connect, to inspire, to educate, and to drive change. Thank you.
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