Wednesday, September 17, 2014

Address to open Western CT State University's Social Work Professional Development Day

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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