On the Home Front
Altarum Institute is assisting the STAR Center, affiliated with the National Alliance on Mental Illness (NAMI), to develop and implement an evaluation of its technical assistance (TA) services. The STAR Center is dedicated to mental health systems transformation through the promotion of consumer-directed approaches for adults with mental health and co-occurring substance use conditions.
In 2015, the STAR Center was one of five National Consumer and Consumer Supporter TA Centers awarded funding by the Substance Abuse and Mental Health Services Administration (SAMHSA). As a TA Center, the STAR Center directly supports consumer- and family-run organizations in building organizational infrastructure and sustainability in two regions of the United States—Region 2: New Jersey, New York, Puerto Rico, and the U.S. Virgin Islands; and Region 6: Arkansas, Louisiana, New Mexico, Oklahoma, and Texas.
In addition, the STAR Center provides nationwide TA in young adult leadership development, by offering young adults training and mentoring to grow their policy advocacy and organizational leadership skills. Families and other supportive adults are offered training and TA on how to support young adults to use their voices and lived experience. STAR Center TA staff also supports young adult-run organizations in their efforts to educate policymakers, providers, and community members about the importance of consumer-directed approaches.
Recently, Altarum worked with the STAR Center to develop a plan for evaluating the STAR Center’s TA and training activities. Altarum assisted in developing a logic model, evaluation design, study questions, and plans for data collection, data analysis, and product development. In 2017, Altarum will assist the STAR Center with implementing the first stages of the evaluation plan.
This evaluation will provide important information about the outcomes of TA and the strategies that can be implemented to build the organizational capacity and sustainability of consumer- and family-run organizations. There is great potential to learn about what works for the STAR Center and its network to develop and disseminate effective practices to other communities nationwide.
For more information about Altarum’s evaluation work with the STAR Center and other behavioral health agencies and organizations, contact Jessica McDuff. For additional information about the STAR Center’s TA services, contact Chacku Mathai, STAR Center Director, or visit the STAR Center website.
Stories of Recovery
Access to Recovery
All stories of recovery are unique, and we want to hear yours. Submit your story online to be shared on social media for the #WeAreRecovery campaign and inspire others. Your story may be featured in an upcoming issue of BHchat Corner: News You Can Use. Read further in this section to learn about BHTAC’s latest campaign #WeAreRecoveryAllies.
The Access to Recovery (ATR) program, administered by SAMHSA since 2004, is a federal treatment initiative that employs a unique voucher payment system to help people who are living with substance use challenges. ATR supports these individuals as they determine the treatment or recovery support services they need on their road to recovery. The name in the following Washington ATR success story has been changed to ensure confidentiality.
You know, every morning I wake up and I literally say, out loud in the shower, “Today I'm going to show up for life. Today I'm going to engage in life. Today I'm going to remain teachable.” And those are the three things that I need to accomplish every day.
That's how Taylor answered when I asked him over coffee what his life is like now. It stopped me in my tracks. Look at the sheer simplicity and wisdom of his three daily objectives.
- Show up (don't isolate).
- Engage (don't hold back).
- Be teachable (forget your ego).
He could have started with the fact that he recently got a job as development director at a Seattle nonprofit, after years of being unemployable. He could have mentioned that he was admitted last fall to a prestigious master’s degree program at Seattle University. Or, he might have said that he's certified in Chemical Dependency, or that he's a recovery coach, a trainer of trainers, and a leader at the Recovery Café. We did get to all that, but front and center for Taylor are the three daily goals, said aloud each morning.
That he knows, without hesitation, that these things are what matters most points directly at the heart of his story and his character. Before crystal meth, Taylor was living pretty well. He was working in nonprofit service organizations, taking care of others.
I worked really hard for 15 years to make sure that other people had everything they needed….I made sure that people had insurance, people had mental healthcare, made sure people had access to HIV testing, health counseling….I worked with the diabetes field, I worked with foster youth…
That job history became, for a while, sort of a bitter joke told on himself.
…and everything that I worked so hard for others to have is what I lost. I worked so hard, like 60 hours a week, to make sure that the communities that I lived in had all these resources, and then crystal meth just took it all. I didn't have my mental health. I didn't have doctors anymore. I didn't have counseling. I didn't have food. I didn't have housing. And so everything that I worked so hard for—it's kind of ironic.
The terrible trajectory out of that productive life could easily have been permanent.
Being addicted to crystal meth…no one ever tells you that you're going to go insane and lose everything. I never thought that would happen. I always had this ego mind-frame, like that will never happen to me. I was still trying to help everyone else.
An accident in 2009 changed all that. Taylor's eyes were damaged; his retinas had detached but the doctors couldn't see that because of very bad cataracts in both eyes. After the surgery to repair the cataracts, it was too late to re-attach the retinas. Taylor was legally blind.
All of a sudden I couldn't see people. I couldn't walk down the street by myself. I really just sank into a deep depression. At that point, I had used crystal meth on a recreational basis once in a while….I had tried it. And then once I wasn't working any longer, it became a daily thing.
Looking at the calm, self-possessed, well-spoken young man across from me, it's hard to imagine exactly how the terror of that time ever gave way—as it clearly has—to clarity and peace.
So it was my first time out alone. I left my apartment. I hit a telephone pole in the face on the way there. I finally found my milk and my cereal. I was in tears the whole time, but I was bound and determined to do it myself.
And this was probably an hour-and-a-half process because I could only see 3 inches in front of my face. I think I knocked down oranges at the display because I ran into it. And I finally got my cereal and I got my milk, and all of a sudden I can hear these clothes hangers knocking against each other. And this lady said, “Can I help you?”
And I said, “Yeah, I need to pay for this.”
And she said, “You're in Urban Outfitters."
Somehow I'd walked out of the Broadway QFC and into the store next to them, cause they're kind of connected in the Broadway Market. I had no idea I was standing in a clothing store trying to buy my milk and my cereal.
I was going blind at the same time that I was in this active addiction.
We talk about isolation a little and how much the smallest gesture of kindness can mean.
I remember one of the changing points was when I was at QFC. And I—you know, I couldn't see people. No one would say hello. I couldn't see anyone to say hello to. There was no eye contact. And I went and I think I got some laundry soap, and I got some quarters in change. And just the cashier grabbing my hand and putting the quarters in my hand—that human touch—like, I bawled the entire way home. Someone just touched my hand….
This is the moment when I start to appreciate how lonely he must have been. I am picturing that generous grocery clerk taking Taylor’s hand and carefully putting the quarters into his palm, giving him what was his but also something of herself. I couldn't see how he'd ever found a path out of that profound isolation. It turns out that one day he literally yelled in sheer frustration, alone in his apartment and unable to find one of his shoes after an hour of crawling the floor. A neighbor phoned for help.
The police came and the ambulance was called.
And they said, “Do you need to go to the hospital?” I'd been up for several days and they took me to Harborview. And they gave me fluids and let me rest because I'd been up for so long. And later the police officer came, out of uniform, just to check on me.
And she was like, “Hey, I did some checking around, just with some people in your building….and they told me how you used to be.”
She understood that something had happened to me to make this situation. And the fact that she took time out of her own schedule to make sure that I was okay and to say, “This isn't you. As a police officer, I know that this isn't you. This isn't your lifestyle. This isn't the type of person that you are. Can we offer you any encouragement? What do you need?"
To me that was a pretty huge moment. This person actually cared.
The obvious question, then, is how the Recovery Café came to be part of this remarkable story.
I came here. I heard about it in outpatient treatment. I was kind of expecting a rundown organization that was kind of small and didn't have a lot of resources. I was blown away when I walked in.
Recovery Café in Seattle, Washington
For those who haven't visited the Café, you need to imagine a lively, open, clean, warm space. The colors are moss and pumpkin and goldenrod. There are giant framed images of Gandhi and Dr. King and Sojourner Truth. There's art. People are playing cards, or talking quietly, or sometimes laughing uproariously. There's always coffee, and food at mealtimes is plentiful and delicious. It's a little like your favorite aunt's kitchen, only supersized and filled with friendly neighbors.
I just came and was part of a circle that became really close. We'd hang out here and play games on the weekend or watch a movie or just have conversations. Those are the people that are my best friends today, still. The people that I'm able to count on.
The Recovery Café is in the business of making family. For lots of people—for Taylor in the rough, uncertain months of struggling to get his life back, it's a refuge like no other. You might think that he'd be ready to move on and leave this place behind. You'd be wrong. Taylor's days are full now, but he's still around at least once a week, still showing up, engaging with life, and staying teachable. Those are still the goals.
Announcing the Launch of the #WeAreRecoveryAllies Campaign
Are you in recovery or consider yourself an ally to the movement or to a loved one in recovery?
Tell us your story!
Whether you are in recovery or identify as an ally, your story has power! Substance use and mental health challenges affect millions of individuals across the world. Altarum Institute’s BHTAC team recently launched the #WeAreRecovery Project on social media, capturing countless inspiring stories of recovery. Now, we are excited to launch an extension of the project that encourages Recovery Allies to share their stories as well. We need your help and your story to keep the momentum going!
How does this campaign define being “in recovery?” The Altarum BHTAC team believes that it is up to the individuals to define their own recovery. We believe that everyone has different and unique circumstances and experiences that contribute to substance use and/or mental health challenges, so naturally everyone’s recovery and pathway to it will be unique as well. In other words, you are in recovery when you say you are!
What is a Recovery Ally? A recovery ally is someone who supports individuals in recovery or supports the recovery movement as a whole. Maybe you have a loved one in recovery, have experienced substance use challenges in your life and want to help those affected by it, work in the field of recovery providing support and strength to others, or simply believe that those who have been affected by such challenges deserve support, resources, and a second chance. Submit your story to tell the world why you are a recovery ally and the ways in which you have seen the beauty of recovery.
All that is required to submit a story online is a photo, your story, and some basic contact information. If selected, your story will be posted on our Instagram page, may be cross-posted to our Twitter and Facebook pages, and may even be featured here in BHchat Corner. Please share this project with your friends and family, and help #WeAreRecovery and #WeAreRecoveryAllies go global!
Participate in the #WeAreRecoveryAllies project by submitting your recovery ally story here. Participate in the #WeAreRecovery project by submitting your personal recovery story here. If you have questions, email the BHTAC team.
For People Living with HIV/AIDS, Housing is the Greatest Unmet Need
Receiving housing assistance has an independent, direct effect on improved health outcomes among people living with HIV/AIDS (PLWHA). According to the
National AIDS Housing Coalition:
- Homelessness is a major risk factor for HIV/AIDS. Rates of HIV infection are 3 to 16 times higher among individuals who are homeless or unstably housed, compared to similar individuals who are stably housed.
- HIV is a major risk factor for homelessness. In communities across the United States, as many as 70 percent of all PLWHA report a lifetime experience of homelessness or housing instability.
- Housing is a matter of life or death for PLWHA. The all-cause death rate among homeless PLWHA is five times the death rate for housed PLWHA. The death rate due to HIV/AIDS is seven to nine times higher among homeless adults compared to the general population. Housing status is one of the strongest predictors of health outcomes for PLWHA, after controlling for other factors, such as drug use, mental health and receipt of medical and social services.
The good news is that progress is being made. In July 2016, President Obama signed the Housing Opportunities Through Modernization Act which modifies the administration and delivery of a number of federal housing programs. Title IV, the Housing Opportunities for Persons with AIDS (HOPWA) Formula Change, shifts the funding formula from cumulative HIV/AIDS cases to living cases. The law phases in a long-advocated formula change that factors in local housing costs and poverty rates, and caps grantee losses and gains. For more information on this new law, refer to the HOPWA Modernization: Formula Update PowerPoint and video presentation on the National AIDS Housing website.
No Puff Piece
Smoking in the Homeless Population
Smoking is an expensive addiction. In light of this, one might think that the wealthy in society would smoke at the highest rate. In reality, the opposite is the case, with smoking rates much higher among the less affluent. According to the Campaign for Tobacco-Free Kids, “Low-income people smoke more, suffer more, spend more, and die more from tobacco use.”
The tobacco industry has invested its great marketing strength to target and addict lower-income groups, and they have succeeded. Of the populations that smoke the most in the United States, homeless people may have the unfortunate distinction of leading the way. It is estimated that there is a 70 to 80 percent smoking rate among the homeless. One study found that homeless smokers, already distressed financially, spend an average of 36 percent of their income on cigarettes. Thus, addiction to tobacco steals funds that could be used for food, shelter, or medical care. This, among other things, helps to perpetuate their cycle of poverty. It costs smokers opportunities to improve their quality of life and, ultimately, jeopardizes their survival.
While nicotine is a chemically addictive drug, smoking is also a deep-seated social habit. Many homeless people were exposed to smoking early in life by family and peers or were introduced to smoking in jail, in the military, or in a behavioral health treatment program2. Sharing cigarettes with others can be an important way to form social bonds, making smoking integral to social life and quit attempts difficult to sustain. Smoking is also considered a coping mechanism or a reward for enduring the hardships of homelessness. The culture of smoking among the homeless may seem illogical from economic and health perspectives, but the problem is complex and there is no simple solution.
Quitting tobacco has significant benefits, but the inner voice of addiction is powerful. Creative strategies must be implemented that take into account the unique and pressing needs of homeless people. Smoke-free buildings and grounds may be the key to weakening the connection between smoking and socialization and may encourage quit attempts. Financial incentives to be tobacco-free, targeted education about the effects of smoking, and tailored resources for quitting are also sound options.
Of primary importance is changing the complacency of service/care providers who accept smoking as an inevitable aspect of homeless life. It is not. Most homeless smokers want to quit and they should be offered effective interventions. Smoking cessation makes other priorities like food and housing easier to attain and removes many health and financial burdens from a population that is already coping with life’s heavy load.
Spotlights and Highlights
Hidden and Uncounted—Native American Two Spirit People and HIV/AIDS
Mi’kmaq Two Spirit Petroglyph
According to the Centers for Disease Control and Prevention (CDC), when population size was taken into account, Native American and Alaskan Native (NA/AN) people ranked third after African Americans and Latinos in an analysis of reported HIV/AIDS diagnoses through 2005. The CDC also reports that NA/AN men who have sex with men (MSM) and NA/AN MSM with a history of injection drug use made up 58 percent and 15 percent, respectively, of all NA/AN people living with HIV through 2010.
Several things confound attempts to accurately document incidences of diagnoses. Although State laws about reporting new HIV diagnoses apply to providers and laboratories serving NA/AN Tribal and urban facilities, Tribal facilities on Sovereign Nations are not required to report infectious diseases, thus skewing the numbers considerably. Ethnicity and cultural misclassification of HIV/AIDS surveillance data is common, as many providers unilaterally assign incorrect ethnicity to NA/AN individuals, or the individuals themselves intentionally misidentify themselves due to concerns about confidentiality, fear of experiencing stigma in their communities, or—in the case of Two Spirit people—fear of being “outed” to their people.
Compounding challenges related to documenting reported cases of HIV in NA/AN communities are the multiple layers of discrimination faced by NA/AN people self-identified as Two Spirit.* Historically, Two Spirit people were honored and occupied special roles within the framework of the Tribal system. Two Spirit people were described as having the spirits of both genders and possessing the ability to move effortlessly between them. They were acknowledged as intermediaries between the genders of the people of the community and, as such, were the keepers of the ceremonies and the medicines connected with them. Multiple genocidal tactics, including boarding schools designed to eradicate Native languages, cultures, and healing ways, and to assimilate children as young as 3 years into the dominant culture, turned those who were once considered sacred into those considered profane. According to the creators and staff of these boarding schools, not only was it wrong to be Native, it was doubly wrong to be Native and Two Spirit. This mindset has been passed down through some assimilated survivors of the residential schools and has created extreme dissonance between assimilated and non-assimilated Indigenous communities.
These factors have kept many Native Two Spirit people from seeking the diagnostic, preventive, and palliative care they need. However, many organizations have been created all over North America to ensure that Indigenous people who identify as Two Spirit have support and ways in which to express who they are in safe spaces. This support includes connection to safe and confidential counseling, testing, and care for health-related issues, including HIV/AIDS.
Much still needs to be done in order to return Two Spirit people to their traditional standing and roles within the Circle of Indigenous people. Educating healthcare providers in Native communities is important to ensure that all people receive the best care possible. When providers are educated about all members of those communities, chances are greater that care will be affirming and appropriate. As Two Spirit people learn that they can obtain testing, preventive options, and care in ways that honor instead of malign them, HIV/AIDS diagnoses will decrease and Indigenous communities will experience an increased return to health and wellness.
*Not all Native people use this term. Many have terms/words in their own languages for lesbian, gay, bisexual, transgender, or gender nonconforming Natives of their Tribes.
World AIDS Day 2016
World AIDS Day is one of the eight official global public health campaigns marked by the World Health Organization (WHO). Since 1995, the President of the United States has made an official proclamation on World AIDS Day.
The 2016 Federal theme for World AIDS Day 2016 is “Leadership. Commitment. Impact.” The official Federal AIDS website includes a wealth of resources, including simple, powerful, and engaging ways to take action around World AIDS Day.
One of the many World AIDS Day resources is a project called Positive Spin, a series of real stories from people about their unique experiences along the HIV continuum of care. You can view the Positive Spin trailer here and share your story at #mypositivespin.
Another resource is POZ, a magazine for HIV+ individuals and their supporters, which has a list of events that are scheduled by various organizations across the nation. These resources can help you think about how to encourage HIV awareness in your community.
Latest in Research
Homelessness and HIV: Linking Definitions and Interventions
In a recent report published in the Journal of HIV/AIDS & Social Work, researchers suggest that better understanding of the multiple dimensions of homelessness, including housing histories, can help better identify who might be at greater risk of transmitting or contracting HIV and allow for more appropriate interventions to reduce this risk. According to Elizabeth Bowen, an assistant professor in the University at Buffalo School of Social Work and lead researcher, broad-based and fuzzy definitions of homelessness can fail to account for the housing stability within this population. This can affect the ability to target services to reduce behaviors associated with homelessness and greater risk for HIV infection. Her research looked specifically at residents of single-room occupancy housing in Chicago, a group that illustrates the difficulty of assigning a unified definition of homelessness.
The study found that among these residents, who are considered homeless by definition, significant variation exists in the length of occupancy within this housing option. At one end of the spectrum, a transient population bounces in and out of these buildings on a regular basis. On the other end, long-term residents remain in stable housing for years. According to Bowen, "The long-term residents might need help in other areas, but the research suggests they're not engaging in the same risky behaviors, such as drug use or having multiple sexual partners, as the residents who had been homeless more recently or who still considered themselves to be homeless." Interventions to reduce the risk of HIV for this sub-population would likely be different from the interventions needed for other segments of the single-room occupancy population.
Stress, Drinking, and Alcohol Use Challenges: Linking through Brain Chemistry
Stress and the voluntary consumption of alcohol in response to that stress has been a well-known risk factor in developing alcohol dependence and addiction. However, the brain chemistry underlying the interaction between stress and alcohol is largely unknown. Better understanding the brain chemistry involved in stress and increased alcohol consumption could lead to the root of such challenges as post-traumatic stress disorder.
In a recent study from the Perelman School of Medicine at the University of Pennsylvania, researchers found that rodents exposed to stress had a weakened alcohol-induced dopamine response; they voluntarily drank more alcohol compared to controls. The blunted dopamine signaling to ethanol rose due to changes in the circuitry in the ventral tegmental area of the brain. This area is the heart of the brain's reward system.
According to John Dani, Ph.D., chair of the University of Pennsylvania’s Department of Neuroscience and the study’s lead researcher, this finding shows how stress alters the intricate system of checks and balances within the body’s neurons at the minute level of the neuron’s outer membrane. This change in neuron physiology means that a specific set of neurons that normally inhibit behavior reverse and become excited. The stressed rats in this study consumed significantly more alcohol than controls, and the increase was maintained for several weeks. “The stress response evolved to protect us,” Dr. Dani explains, “but addictive drugs use those mechanisms and trick our brains to keep us coming back for more.” He also noted, “By chemically blocking stress hormone receptors on neurons, we prevented stress from causing increased drinking behavior,” providing a possible way forward in addressing the stress-induced use of alcohol.
Altarum’s Monthly Twitter Chat on Behavioral Health
Please join the next Behavioral Health Twitter Chat highlighting the Altarum Recovery Allies Month Campaign, December 13, 2016, at 2 p.m., ET. Following the success of the #WeAreRecovery campaign on Instagram, Altarum Institute recognized a lack of outlets for allies to individuals in recovery and to the recovery movement as a whole to share their experiences. To fill this gap, Altarum designates December as “Recovery Allies Month” and will be sharing the stories of allies on the @WeAreRecovery Instagram page. December’s #AltarumBHchat will encourage dialogue around what it means to be an ally and why allies are so crucial to the recovery movement and individuals seeking and living in recovery.
It’s not too late to share an ally or recovery story! Visit Altarum.org/WeAreRecoveryAllies or Altarum.org/WeAreRecovery, respectively, for a chance to have your story posted.
Follow Altarum on Twitter for the latest in behavioral health news and notifications about upcoming discussions. Visit BHTAC for a list of Altarum’s previous Twitter chat guests and Storify to review the conversations. The BHTAC team is also on Facebook and Instagram. Be sure to “like” the pages to stay connected with the behavioral health community.